“Dancing through life, skimming the surface, gliding where turf is smooth…”

I’ve caught the Wicked fever, but right now, as I stand determined to try to get pregnant, I feel the exact opposite of gliding. It’s more like I am about to run the gauntlet—sharp turns, hidden barriers and yet more booby traps.

I suppose it’s the same for anyone planning to build a family. We all have our challenges, but I don’t hear much about my type of challenges. Managing chronic Inflammation is already this all-consuming job, one I can never quit. Add to that the unique reproductive circumstances faced by same-sex parents, and the path feels even less straightforward.

The Ghost of Chemo over Fertility

For almost two years, I was on a low dose of Methotrexate, a chemotherapy agent, to treat my Rheumatoid Arthritis (RA). The side effects were brutal: constant nausea, weight loss, and perhaps most alarmingly, my period stopped for over a year. At first, I was relieved—one less thing to manage. My consultant reassured me it wasn’t cause for concern, but my mum thought otherwise. And soon, I started questioning it too.

No periods meant something wasn’t right with my body. It was a sign that I wasn’t healthy enough to conceive, even if I wanted to. At the time, I didn’t want children, but the realisation that I couldn’t hit me like a ton of bricks. After much advocacy and trial and error, I transitioned to biologics. The side effects were minimal compared to Methotrexate, and with returning to an adequate weight, my hormones finally stabilised and my periods returned.

This episode caused me real anxiety. What if the damage was irreversible? To calm my fears, I got a fertility assessment. For anyone wondering, in the UK, the NHS does offer a basic fertility check for free—a small but meaningful step toward peace of mind. Although now reassured, that time in my life still haunts me.

Who knew?

My next concern was pain. Rheumatic pain and I are in constant negotiation and I assumed pregnancy would amplify it. After all, the physical and hormonal stress of pregnancy on a body already battling inflammation seemed like a recipe for disaster.

Encouraged to speak up by others, I told my Rheumatology team about my plans and expressed my fears. The head nurse didn’t bat an eye. She immediately explained that this wasn’t the case for most patients; in fact, it could be quite the opposite. What a surprise! Not only would my RA likely go into remission, but they also had enough data to know that roughly six weeks after the birth, I’d likely have a flare up. I was shocked. The discussion’s focus then shifted to medication, painting me a pretty detailed picture of my options, i.e., the drugs that are “safe” whilst pregnant.

What does this even mean, safe? Does it means safe for both mother and baby? Or baby first? Nothing is surely the safest then? Even if that means enduring, suffering through pregnancy. And if you do seek some relief, guilt piles on. Your own guilt and the one everyone else you feel puts on you. But as Elyse’s story1 told me, a broken vessel cannot be good for the baby either. Recently, I have come across another story echoing just that. Courtnay, also an RA patient, had to accept to take to prednisone2 she was in so much pain.

I had so much guilt, but that wasn’t healthy to be in that much pain and inflamed. That’s definitely not good for the baby, I’m sure.

Information is not a guarantee for anything, but having the conversation, my concerned being heard and met at least reassured me. With the right plan, I could manage this pregnancy, possibly without worsening my condition.

The Unique Challenges of LGBTQ+ Parenthood

In a same-sex relationship, the process of starting a family is far from straightforward.3 At some point, my partner and I will need to find the “right” sperm donor. We want the donor to reflect both of our heritages and so we are in search of a West Indian/Caribbean (black) donor. After an initial search, no matches were coming up. We were aware of shortages in donors of colour,4 but none? Maybe, we should not be so set on this; but upon reflection, we have decided this makes the most cultural sense for us as a future family.

And then there are the financial implications—intrauterine insemination, in vitro fertilization or other assisted reproductive methods aren’t cheap.

And when is the right time to take this step? Will there ever be a perfect time?

Right now, every step forward seems to bring at least another three new questions.

Where I Stand Now

I’m beginning to learn to embrace the uncertainty, accepting that my path, our path, will have as many turns as it needs. It only adds depth to the journey. These days, I find that Billy Joel’s Vienna both holds me up and cradles me, every word of it.

Unlike most of my chronic illness journey to-date, this chapter will not be one of loneliness. I’m determined to lean on my friends, this community, and the power of self-advocacy to navigate what lies ahead.

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My story is one of a surrogacy project that did not happen. I thought it would be about doctors not listening; but looking back, I have realised this story is as much about my own unacknowledged prejudices as it is about theirs—ableist lines of thoughts about my own body, about disabled bodies, useful bodies, worthy bodies.

This was before learning from the community, before I had accepted the aftermath of my neuropathy, and reconciled with my disabled self. Let’s face it, I did not know what a disabled life was about, at all, before living mine. I simply had not considered it.

After writing the piece, I could not stop thinking back to that moment I saw Alison Lapper Pregnant on Trafalgar Square about 20 years ago. How it left me a bit blank. I did not know what to make of it—compassion or any emotional response: sub-zero!

It is as if I am seeing the work for the first time. I see a most humanely beautiful pregnant body.

I give my most sincere thanks to Marc Quinn and Alison Lapper for giving me the permission to feature the work Alison Lapper Pregnant alongside my story.

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And There Would Be No Baby

In our early 20s, a special friend of mine and I decided that when the time came, if I was still fresh enough to, and it was still his wish, I would carry his child or children.

This moment came in 2018, 3 years after I fell ill with an acute neuropathy that nearly saw me out. Disabled, weak, in deep pain at times and with profound fatigue, I was otherwise healthy, and I assumed my eggs would be as good as any other 40-year old. The surrogacy would be my second pregnancy. Therefore, not a complete newbie and realistic regarding the joys of baby growing.

For ourselves, my husband and I were already uncertain about adding to our family before I became disabled. But now, we felt—or was it I?—that the illness had made the decision for us. Conception was not really problematic, but we were just about coping day-to-day with my care and our family unit. The prospect of raising a second child just felt insurmountable for us at the time. I felt so much guilt already towards my child and husband. How could I inflict this remnant of myself onto yet another human being?

The surrogacy felt so important to me. My body would not let me hold my husband or my child, my body would not let me go where I needed or wanted to, my body would not let me read or use my mind, but growing a baby? Yes, my body still could. Once that egg would be cosily nestled in my womb, there would be no stopping it. The process of pregnancy is largely governed by the autonomic nervous system —it’s nearly on autopilot, little need for motor neurons. I was determined to put my body to good use, for my friend and his partner and for myself.

We discussed the project at length. I contacted my neurologist for advice. I was somewhat concerned by the risk of relapse as the neuropathy I contracted can be triggered by pregnancy, and what to do about all the drugs I was taking?1 And all these other residual symptoms? He had very little to say, which is rather unusual for the character, and gave me an enthusiastic green light.

The intended parents visited fertility clinics and sought legal advice regarding the surrogacy pathway to legal parenthood.2 And on we went to see an obstetrician to discuss how the pregnancy could or would be managed, monitored and how the delivery would be likely planned, possible post-partum facts we should be aware of considering my disabilities and chronic fatigue. We were not discouraged by the obstetrician and he was all politeness. He acknowledged there was potential for complications, but stayed very vague and brief. Most questions were met by “we will help you with that.” But when, why, how? The consultation ended quickly with a cheerful “get back in touch when you are pregnant.” We left rather deflated and a bit dumbfounded. Was our surrogacy project so odd or banal?

The following days, silence… I felt empty. “We will help you with that” kept looping around in my head. It had the music and the false reassurance of “we will make sure you’re comfortable.” I had been told these words many times while in intensive care during the acute phase of the neuropathy. At some point, a top of the range super duper pressure-redistributing mattress was brought in. My husband and I were joking about it with the nurses; they said it was the most expensive bed in the whole hospital. By that time, I was tetraplegic, so we thought it made sense. My husband left with our daughter, she was 4 then. We said good-bye as if we would obviously see each other the next day. Later, my breathing became really weak and so tiresome. The central line came in, and other machines started to crowd my bedside — all these hours watching House MD had kept me rather calm until then, but now I felt anxious. In a whisper, I kept on asking what was going on, and inevitably I was met with “we will make sure you are comfortable, don’t worry,” “what do you mean comfortable?” I was very comfortable on that fancy bed! “Why should I not worry?” Finally, I cornered a nurse. “You have not been told?” she looked a bit grave. “Let me get a doctor.” Everybody was getting ready to put me in a coma and hook me on a ventilator for an unknown period of time. By an act of grace or the action of intravenous immunoglobulins, I was spared that trauma, but that’s another story.

In the end, I cannot remember when we all got back in touch after that obstetrics appointment. The reluctance to discuss potential complications filled my friends with doubts. They had decided they would not risk my health and our family. The uncertainty was too great.

Comfortable… comfortable… COMFORTABLE! Pounding, screaming in my head.

So, we all agreed to shelve our surrogacy project. Maybe we should have sought other medical teams. Was it because I was disabled? Disabled people are often not thought as sexual beings, and they still have to defend their reproductive rights.3 Was it too alien to think of me pregnant? Was it because it was for a surrogacy, a mixed-race surrogacy? Maybe it was for none of these reasons. But more than anything else then, I felt that as a patient, I had again been belittled, deprived of agency over decisions about my body.

Information withheld, a wall of silence…

It may be the simpler matter of the doctors not knowing, or not wanting to say not knowing. I wish we had been met with more compassion. Maybe we would have come to the same decision, but it would have been an informed decision, our decision.

And again, this feeling of grief for an abled body gone.

It could be that we did not want it enough.

It could be that I did not want it enough.

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On a sunny Wednesday morning, my daughter arrived by elective caesarean. Her birth felt like crossing the finish line of a marathon—months of relentless physical and emotional endurance, culminating in relief, joy and exhaustion. For the first time in months, I took a deep, deep breath and felt like I could fill my lungs again.

I’ve lived with asthma since I was four. Running through a field of long grass sparked my first attack. Back in the 1980s, asthma was a misunderstood and feared condition, PE teachers cautioned me not to overexert myself and friends would ask for a puff of my inhaler out of novelty. Asthma, like many chronic conditions, soon became a routine part of my life.

When I found out I was pregnant with our long-awaited baby, my asthma didn’t even cross my mind. The first trimester was filled with the usual worries, but once I passed the 12-week scan I thought I could relax and enjoy the experience. As my bump grew, so did the constant feeling of heaviness on my chest and I was relying on my inhalers too often. A trip to my GP left me frustrated, I was told that my peak flow readings (used to measure how quickly I could exhale) were normal and that my breathlessness was probably just due to anxiety. Despite my existing asthma diagnosis, my symptoms were being dismissed as all in my head. I even started to question myself and I pushed myself to carry on as normal.

The weeks that followed were incredibly challenging. I couldn’t walk very far without feeling tightness in my lungs and a heaviness on my chest. The constant fatigue resulting from not being able to breathe properly is something no-one considers. Nights were spent distracting myself from the tightness in my chest by focusing on word puzzles. I felt a constant pressure to show everyone it was all ok, when I was simply trying to survive.

Eventually, I insisted I was referred to a respiratory consultant through my work’s private healthcare. That appointment was thankfully a huge turning point. The consultant diagnosed me with severe, difficult to manage asthma, exacerbated by the hormonal and inflammatory changes of pregnancy. He prescribed steroids and additional inhalers to help manage my symptoms. He assured me that my struggles were genuine asthma, not anxiety. It was indeed in my lungs… I was also given a nebuliser to use at home and felt in control of my own health for the first time in months.

Although my breathing didn’t improve dramatically, knowing I was under the care of someone who understood my condition gave me much needed reassurance.

As I entered my third trimester, I decided to ask for an elective caesarean. After all, aren’t we constantly told that breathing is everything during labour?

“Deep breath!”

Well, that I could not at rest… It took weeks of advocating for myself before the hospital would consider. In the end, the 37-week scan revealed my daughter was lying oblique, a position that made a caesarean necessary. I was so grateful for the teamwork between my daughter and I.

Pregnancy can leave a lasting impact on chronic conditions — it took years for my asthma to stabilise again. My exceptional respiratory consultant is still the only one I trust with my asthma care.

My pregnancy was undoubtedly challenging and taught me the need for persistence and self-advocacy for chronic conditions. Regardless, my daughter was undeniably worth it.

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Some helpful links:

1. https://www.asthmaandlung.org.uk/conditions/asthma/manage/pregnancy

2. https://allergyasthmanetwork.org/what-is-asthma/how-does-asthma-affect-pregnancy/

Last week, we opened our 5-part mini-series with Elyse sharing with us the profound challenges of chronic pain during pregnancy, particularly when facing medical incomprehension. She told us about a very useful hormone called relaxin that can bring havoc to a pregnant body; ironic name.

She “was left on [her] own to figure it out.” However, she also told us it’s not all bleak and pain, that benevolent strangers, friends and family come forward to help.

I learned that I had amazing people to lean onto.

This is what the our community hopes to be with this series, a community to lean onto.

Elyse also gave us her tips to make things less painful and not without humour; we loved “You are now living like a mermaid.”

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So, what’s next?

• In “The Air That I Breathe and My Baby’s First Cry”, Serena recounts how she embraced pregnancy like a breeze before her asthma worryingly caught up with her.

• Charlotte reflects on a non-event; a surrogacy that did not happen—or was it that it could not or would not happen? She cannot decide how her disabilities weighted in. In “Carrying and Caring, Baked In?”, she questions stereotypes and prejudices, including hers, of conception, family and the medical profession’s role in and around pregnancy.

• Natasha, our founder, starts off her pregnancy journey as a rheumatology patient, laced with intersections of sex and race, “In Choosing Motherhood: Chronic Pain, Fertility and The Unknown.”

• Finally, the series will conclude with a reassuring conversation with Lili, OB/Gyn doctor. Yes, some doctors want to listen to us and do want us to have good pregnancies and healthy babies!

Stay tuned!

The InflamMed Team

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The moment those two pink lines appeared in 2020, a massive wave of emotions crashed over me. Immense joy and excitement first, of course. But then, it felt like an alarm went off in my body. Those memories of the intense pelvic girdle pain that had marked my first pregnancy journey, back in 2014, came up to the surface all at once in a bout of panic.

Now, I'm no stranger to chronic pain and illness. I have lived with severe bilateral shoulder impingement syndrome, multiple chronic tendonitis and bursitis, and hypermobility all my life, and hypothyroidism for years. I also have idiopathic thrombocytopenia (low platelet count) and had it during my previous pregnancy, unbeknownst to me. I'm sharing my story not to frighten you, but to empower you with knowledge and resources I wish I'd had, and to remind you that you're not alone in this journey.

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Pelvic Girdle Pain and Pubic Symphysis Dysfunction

Pelvic girdle pain (PGP) is more than just a pregnancy ache; it's a complex condition that can be utterly debilitating, impacting every aspect of pregnancy, and sometimes even extending beyond childbirth. Imagine pain so intense that every movement feels like a struggle.

PGP involves pain in the pelvis, hips, and lower back, often stemming from ligament laxity and muscle strain. It can include pubic symphysis dysfunction (PSD), where the cartilage connecting the pubic bones becomes overly mobile, as well as sacroiliac (SI) joint dysfunction, where the joints that connect the sacrum to the ilium bones become inflamed and unstable. While both PSD and PGP are common, the most severe cases, where pain significantly restricts daily life, tend to be less common, which may explain why these conditions are often misunderstood and dismissed by healthcare providers.

During my first pregnancy, things were uneventful and smooth sailing up to the third trimester. Relaxin, the hormone secreted during pregnancy to help prepare your body for labour, did its job a bit too well and relaxed my ligaments so much that my body felt like a crumbling tower. I couldn't sit, or stand up, for more than mere minutes at a time. Each step I took felt so painful, and tears were flowing every night as I was trying to catch some sleep. I rarely hear people talk about how debilitating this condition is. Even in the thick of it, I would read about it and couldn't find many articles truly reflecting the severity of my experience. The lack of awareness, discussion, and pain management options, combined with the fact that it never stops, even for a minute, makes it difficult to manage.

The pain followed me everywhere, even into my dreams. Because no one in my family had ever experienced anything like it, I couldn't shake the feeling that I was somehow flawed, that my body was abnormal and broken for not being able to carry a baby to term without agony. I was already feeling restricted in my movements because of my shoulders, which I internalised as “feeling normal”, after so many doctors told me it was in my head. I felt trapped in a body that seemed to rebel against me at every possible opportunity, but I didn't want to let that dictate my life and stop me from having a family.

And you know what they say: that seeing your baby makes it all worth it in the end. While it was certainly true for me, I wish it didn't have to be such an agonizing process. The endless love I felt for my first born made me believe that, given enough time, my body would forget and do better next time.

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A Pregnancy and a Pandemic

Before being pregnant again, I had healed my body with physical therapy and worked on my posture, alignment and strength through martial arts, especially Taekwondo. I focused on strengthening my legs, hips, and back. After preparing for what felt like a 6-year marathon, I felt ready to tackle this adventure again. After months and months of negative tests, I finally saw a positive. A few weeks into that pregnancy, the whole world went on lockdown due to the Covid Pandemic, in 2020.

Then, at the beginning of my second trimester, it showed up again (exactly as my last doctor had predicted): Earlier and with a vengeance. This time, the emotional weight was heavier, because I KNEW what was to come. My new doctor didn't seem to understand the condition and had no idea how to deal with it. I was left on my own to figure out how to get through this. I wish there would have been some support and a plan coming from my doctors other than patience, bedrest, and a pregnancy belt. The recommendation should have been to see a pelvic floor therapist and a physical therapist.

If you've ever seen the movie “Groundhog Day”, you can imagine how those 5 months felt. Waking up for approximately 150 days or so (but who's counting, really) to the same exact reality, pain and being confined to the same bed. At times, I found myself really struggling with anxiety, guilt, frustration, and shame. I had to accept that I was becoming dependent on other people's help for everything. It felt heavy, but in this exercise, I learned that I had amazing people to lean onto.

Prioritizing Moments of Connection

The flutters and kicks from within became my favourite moments of each day. Each movement was a reminder of the life growing inside me. I could notice patterns and see that my baby started each morning with a little bout of hiccups. I noticed that contrary to my first pregnancy, this tiny new person-to-be seemed to sleep while I slept. I also felt his strong feet up my ribcage, and we joked that his feet would be enormous—which turned out to be true! It was funny to imagine what was going on in there, as I felt what seemed to be popcorn kernels popping, and kickboxing sessions against my bladder. I enjoyed filming some of those powerful baby kicks, documenting the growth of my belly by making short impromptu photoshoots with my daughter.

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Early Labour Risk

Cue to week 29 of pregnancy. I started experiencing heaviness and a feeling of impending labour. My doctor dismissed my concerns, but I insisted that they check and wouldn't leave until I felt reassured. They told me that I was showing signs of early labour and gave me some forms and documents to bring with me to the hospital, should I deliver in the coming weeks. I felt scared, powerless, and frustrated that my body would do this, especially while on bedrest. I was told to go on complete pelvic and bed rest until it would be time to give birth. As for my forever increasing pelvic girdle pain, I was not given any options for relief.

In the end, we made it to 37 weeks and a few days. My water broke in the early hours of the morning, and I was admitted a few hours later. Things went well and the team did a wonderful job. This birth experience has healed me, in a way. Unfortunately, my pelvic girdle pain did not entirely disappear after delivery, this time around. I am still working on healing the aftermath of this debilitating condition, years later.

A Call for Comprehensive Care

My hope extends beyond my personal story. By speaking openly about Pelvic Girdle Pain and Pubic Symphysis Dysfunction, I'm advocating for a fundamental shift in how we understand and treat maternal health challenges. The most crushing aspect of my journey wasn't just the physical pain, but the profound emotional isolation that came with it. When doctors repeatedly oversimplified my experience, reducing it to “just” pubic symphysis pain, they missed the full-body impact of my condition. This wasn't a localized issue; it was an all consuming experience affecting every aspect of my life and I was being told (once again) that it wasn’t that bad.

The notion that “having the baby will fix everything” is not only misleading, but also dangerous. Without a comprehensive management plan, healthcare providers can inadvertently sentence patients to potential long-term physical trauma. Conditions that could be addressed through targeted physical therapy, early intervention, and holistic support often become chronic and debilitating pain that persists long after pregnancy and can impact the pregnant person’s family life, career, self-esteem and social life. The lack of mental health support exacerbated my frustration, leaving me feeling alone, dismissed, and gaslit. So please remember that your experience is valid, your pain is real, and you deserve adequate support. Whether you're reading this while navigating pain or illness, preparing for pregnancy, or supporting a loved one, know that the path ahead may be challenging, but it's navigable with the right tools, support, and knowledge.

This journey has taught me that we are stronger than we think, more capable than we believe, and deserving of better care and understanding. A little compassion and proactive care could have helped me avoid the complications that led to chronic pain, even years later. Let's continue to share our stories, support each other, and advocate for better recognition and treatment of PGP. Because both mothers and babies deserve nothing less than comprehensive, compassionate care.

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Practical Strategies and Support

Navigating Pelvic Girdle Pain requires a multi-dimensional approach. I learned this not from medical textbooks, but from my own gruelling experience. I hope these tips can help. If you have some of your own, please leave a comment below to help others!

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Physical Positioning and Movement Tips

• Sleep on the slippery side of a sleeping bag to reduce friction and make turning easier

• Use a pregnancy pillow between your knees and ankles to reduce pelvic strain

• Keep your legs together when turning in bed or getting out of the car - think of your pelvis as one solid piece. You are now living like a mermaid until further notice.

• Use a shower stool to reduce standing time (and forget about shaving those legs!)

• Sit down to put on pants, socks, and shoes (and choose slip-on shoes, skirts and dresses whenever possible)

• Don’t bend to pick things up if you can avoid it.

• Use a grabber tool to pick up items from the floor and place frequently used items at waist height or higher to minimize bending

Mobility Tips

• Use a walker or crutches to distribute weight more evenly

• Use shopping and grocery delivery services

• Ask for help carrying heavy items

• Park your car as close to the entrance as possible and use designated parking if available

Pain Management & Emotional Resilience

• Apply heat or cold packs strategically (check with your doctor first)

• Invest in a good supportive pregnancy belt, a pregnancy pillow and a pelvic cushion if you can

• Take warm baths (not too hot, of course!)

• Practice gentle exercises and stretching recommended by a physiotherapist

• Create a “pain survival kit” with comfort items to help on bad days

Physical Health seen as a holistic approach

• Work with specialized physiotherapists, massage therapists and other professionals who understands pregnancy-related pain

• Learn gentle stabilization exercises that don't increase your pain

• Use supportive devices like pregnancy belts and pelvic cushions, but understand they're not a miracle cure

• Modify your daily activities and optimize your physical environment to reduce physical strain

• Recognize that healing is not linear

Mental Health support

• Find a counsellor who understands chronic pain during pregnancy

• Connect with support groups where you can share without judgment

• Practice mindfulness techniques that help stay present in the moment such as breathing exercises and journaling

• Communicate openly with your partner about your experience

• Acknowledge the emotional weight of chronic pain and adjust your expectations

Medical Advocacy

• Document every symptom meticulously

• Request comprehensive pain management plans

• Don't be afraid to seek second opinions (try to do so very early on. My pregnancy was during Covid, which made it difficult to do)

• Understand that your pain is real, even if doctors minimize it

• When speaking about your pain levels, try using a scale to describe it more accurately to your health provider (for ex: my pain is a 7/10 today)

Pelvic Pain Support Resources

• Local or online chronic pain support groups

• Specialized clinics focusing on women's health

• Pelvic Partnership (UK-based support organization)

• International Pelvic Pain Society

• Pelvic Pain Support Network

• NIH Pelvic Pain Resources for both patients and healthcare professionals

*Please note that presenting these links do not indicate endorsement, as they are a starting point for you in obtaining information and support.

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Why now? Well, I’ve lost count of how many times my consultants have asked, “Are you pregnant or planning to be?” It’s the first thing that comes up. And every time, I just sit there thinking:

It’s because of my age, right?

Are you asking me because you're South Asian and I’m South Asian and you think I should be married with children by now?

Should I tell you that I’m in a relationship with a woman, so there’s no chance I’m pregnant and you can stop awkwardly asking me? But what if they are homophobic…

Are my meds that toxic?

But now, things are different. I am (we are) thinking about it—and wow, is it overwhelming. So, I reached out to some of you and asked, "What can I expect?" That’s where my conversation with Elyse Robi began. Her story truly hit home. The challenges, the unknowns, the hope—it all made me realise how much we need to be talking about this.

This series on pregnancy and chronic inflammation is for all of us navigating the unknown. We're diving into the questions, fears and realities, so we can support each other on this journey. Elyse's insights are just the beginning, and I can’t wait for you to hear them.

Let’s figure this out, together.

Tash

Dear Community,

Have you, like us, lost count of how many times your doctor has asked, "Are you pregnant or planning to be?" Perhaps those conversations leave you feeling overwhelmed, confused about medication, or utterly alone in the face of countless unknowns about conceiving and carrying a baby? If so, we hear you. You are absolutely not alone.

Here at InflamMed, we know firsthand the ache of feeling seen as "complicated rather than complex", and the significant information gap concerning fertility and pregnancy for individuals with chronic inflammation and illnesses.

That's precisely why we're so incredibly proud to launch InflamMed's Pregnancy Series, passionately led by our own Elyse Robi! This vital series aims to provide essential medical and community support, offering a crucial space to dive into the questions, fears, and realities of this unique journey.

For our first bi-weekly dispatch, we will be sharing Elyse’s profoundly moving story about her journey with Pelvic Girdle Pain (PGP) and Pubic Symphysis Dysfunction (PSD) during pregnancy. Elyse’s experience vividly highlights the immense physical and emotional toll of chronic pain during pregnancy, where her symptoms were too often dismissed or misunderstood by healthcare providers. She felt "left on [her] own to figure out how to get through this", leading to her powerful call for a "fundamental shift in how we understand and treat maternal health challenges".

Most importantly, Elyse's story doesn't just validate; it also offers practical strategies and support for managing PGP, including actionable tips on physical positioning, mobility, pain management, and mental health resources. This is about providing the tools shewished she'd had.

We invite you to read Elyse’s story and join us as we figure this out—together. Over the coming weeks, we will delve into more vital topics, from navigating fertility with a chronic condition and the emotional toll of high-risk pregnancy, to postpartum adjustments and the future of reproductive care.

We are committed to empowering you with knowledge, validating your experiences, and advocating for the comprehensive, compassionate care you truly deserve. Thanks for sticking with us.

📬 Stay tuned as we explore fertility, medication decisions, postpartum transitions, and more.

Prevention Isn’t New — But It Still Isn’t Whole

The UK government has just released its long-awaited 10-Year Health Plan for England— and we’re glad to see prevention finally getting the attention it deserves. After years of crisis-mode medicine, this shift is long overdue.

The plan highlights mental health as central to wellbeing. It echoes what we’ve long said: prevention must come before reaction.

But there’s one glaring omission: nature.

There’s no mention — not one — of how access to green space supports physical and mental health, even though the evidence is staggering:

• Growing up near green space can reduce adult mental health issues by 55%

• Green neighbourhoods lower the risk of depression by 16% and anxiety by 14%

• Biodiversity strengthens both ecosystems and our immune systems!

What if doctors routinely prescribed time outdoors? (If interested please check out our podcast episode with GP Dr Hannah Coysh who talks more on this topic and why she is prescribing time in nature to her patients).

Scotland’s Green Health Partnerships show it can be done. It’s time England caught up.

If we’re serious about prevention, we must stop separating human health from ecological health.

Thanks for sticking with us.

Whether you’re navigating pregnancy, policy, or just trying to get through another week with chronic inflammation, we’re glad you’re here.

Warmly,
Team InflamMed

The Earth is not yet flat and we have not fallen off its edge!

But if you’ve tried to access healthcare recently, it might feel like we’re sliding perilously close. Day in, day out, headlines scream that the NHS is on the brink of collapse. You don’t need to have a long-term condition to notice — even the fit and healthy are struggling to book a GP appointment.

And still, prevention is a whisper in the wind. As Lord Darzi said years ago, and Wes Streeting echoed recently: the NHS can be extraordinary in a crisis, but for many of us living with long-term illness, it rarely feels like we get its best. Cancer, autoimmune conditions, pain syndromes, asthma — these aren’t edge cases. They are common. And still, the system doesn’t feel built for us.

But don’t worry, AI will save us.

Except… humans need humans to care. That is what we’re missing most care; real, human, consistent care. We know it because we’ve felt it — over and over — at InflamMed. The loneliness of misdiagnosis, the gaslighting, the silent waiting lists. The ache of being seen as complicated rather than complex. Would it be too much to talk of medical abuse?

It’s not just patients who are burnt out. Healthcare professionals are too. So while we wait for the tech revolution, how about we invest in the humans who still show up? Let’s resource the ones who care enough to ask the second question, to read the notes, to say, “I believe you.”

What We’ve Been Up To

Smarter Tracking for Flare-Aware Movement: Our Collaboration with Mana Medical

We recently published an article about the invisible minefield that is physical activity when you live with chronic inflammation. You know the game: push too hard, flare. Rest too much, stiffen. Move carefully, still flare. No one wins.

Mana Medical is running a beta trial of their new app designed for people with inflammatory conditions who want to better understand how their body responds to physical activity.

The beta uses your wearable and a daily symptom check-in to help you recognise patterns, avoid flare-ups, and regain a sense of agency.

You’ll receive:

• Free 6-month InflamMed premium subscription

• £20 Amazon voucher

• Early access to a tool designed for people with inflammation, with people like you

It takes seconds a day. You just need:

• An iPhone

• A wearable device

• Willingness to share honest feedback

Spots are limited — sign up here. Don’t have an iPhone (like us)? Don’t worry. Mana is already working on other operating systems as part of phase 2.

Pregnancy & Inflammation: What We’re Building

We’re deepening work on our Pregnancy & Inflammation series.

We’re curating powerful first-person stories — from surrogacy struggles, autoimmune flare-ups, fertility challenges, and complicated choices around meds and motherhood, from people who’ve lived it.

We’ll also feature expert input to ground these stories in clinical context.

Why are we doing this? Because chronic inflammation and pregnancy is not a niche. And yet, so many of us are left in the dark. We want better information, yes. We also want honesty, empathy and solidarity.

Finally…

Natasha will be speaking at the British Society of Lifestyle Medicine conference later this year. Ever wondered what lifestyle medicine actually means when you live with unpredictable health? Stay tuned.

We wanted to acknowledge that we’ve been quiet lately — not because we’ve fallen off the edge of the Earth (though it’s felt close at times), but because like many of you, we’ve been managing our own health. InflamMed is run by people living this reality — the flare-ups, the fatigue, the constant recalibration. That’s why we disappear sometimes.

Thanks for sticking with us.

Warmly,
Team InflamMed

In our last article, we talked about the ongoing struggles of engaging in physical activity when you live with chronic inflammation—the constant trial and error, the unpredictable flare-ups, and the lack of real, personalised guidance.

How do you know when to push and when to rest? And how do you keep going when what used to work suddenly makes you worse?

Imagine if you could actually tune into your body’s boundaries—not just with hindsight, but in real time.

What if you had a way to see what’s happening in your body at that moment, not rely on general rules or assumptions, but make decisions based on how your body responds today, at 3pm—not how it responded yesterday, or how it might tomorrow?

Why We Need a Smarter Approach to Exercise

For most of us, managing movement is a guessing game. Some days, a short walk feels great. Other days, the same walk wipes us out. Strength training might help in theory—but it’s impossible to know when it’s too much until it already is.

That’s because chronic inflammation isn’t consistent. There is no reliable pattern. What feels fine one day can cause a flare the next. The only consistent thing is the inconsistency—and that’s why traditional exercise advice just doesn’t cut it.

The Mental Toll of Uncertainty

Beyond the physical impact, there’s a mental and emotional load that’s often overlooked. The fear of triggering a setback. The frustration when something you used to enjoy now feels risky or painful. The cognitive fatigue of constantly adapting and recalibrating expectations.

Our brains are wired to crave routine—but how do you build habits when your body is constantly shifting the goalposts?

It’s exhausting to do everything "right" and still not know how you’ll feel afterward. The trial-and-error becomes more than tiring—it can become demoralising.

For those who used to see movement as a core part of their identity, the disconnect is especially hard.

How do you stop doing something that once brought you joy, that once felt like you? And how do you relearn your body's limits when they change every few weeks?

This isn’t about laziness or motivation. It’s about not having the tools to listen to your body clearly enough.

Introducing Mana Medical’s Beta Trial

A Smarter Way to Track What Matters

That’s why we’re excited to invite you to join a new beta trial with Mana Medical, a team developing smarter ways to track and understand your body’s responses to physical demands.

Using data from your wearable device and short daily symptom check-ins (pain, stiffness, fatigue), Mana’s app aims to reveal meaningful patterns in real-time —not static rules, but moment-by-moment signals that can help you tune into what your body is trying to tell you.

Importantly, it offers something we often can’t give ourselves: external perspective. When we’re too close to our own routines, it’s hard to notice trends or rethink assumptions.

Something you’ve been ignoring as irrelevant might actually matter. The time of day, the sequencing of activities, even subtle shifts in sleep or mood—these could all be influencing how your body responds to movement.

The Beta is for you if you:

• Have Rheumatoid Arthritis (RA) - diagnosed or undiagnosed - and struggle with inflammation or flare-ups after physical activity and want better ways to anticipate them.

• Feel stuck in the boom-and-bust cycle of activity and fatigue.

• Want help learning how your body actually responds to physical activity—without second-guessing.

What you get:

• A free premium InflamMed subscription - get access to all content for 6 months.

• A £20 Amazon voucher

• Early access to a tool built specifically for people like you

What Mana needs from you:

• A few seconds each day: You’ll get a daily 5PM push notification to input your symptoms (pain, stiffness, fatigue).

• An iPhone and an activity-tracking wearable.

• Willingness to share feedback as new features are tested—these are shaped by real patient input from earlier stages.

Spots for the beta trial are limited. If you’re ready to take part in shaping a better way to manage physical activity with inflammation, click here to sign up.

Note: Mana acknowledges that this current beta requires access to both an iPhone and a wearable device, which unfortunately excludes many potential users. They are actively working on expanding access and hope to release a more inclusive version in the near future.

If you are interested in being updated when they full launch in a few months time, you can fill out an eligibility form and leave your email on their website.

Because physical activity should work with your body—not against it.

If you live with chronic inflammation, chances are you’ve been told at some point:

"Exercise will help your pain."

"Just move more—it’s good for your joints!"

"Try yoga, pilates, or some light weights."

And yet, for many of us, it’s not that simple.

What counts as "exercise" when your body doesn’t respond the way it's supposed to?

For some, exercise is going to the gym, lifting weights, or training for an event. For others, it’s simply making it through the grocery store without needing a three-hour nap afterward. Some days, exercise means playing a sport you love, and other days, it means getting from your bed to the couch without flaring up.

Yet the advice we’re given—whether from doctors, fitness experts, social-media influencers or well-meaning friends—is rarely designed for people like us.

Why We’re Talking About This

At InflamMed, we’ve talked about these challenges for a while—because most exercise advice simply is not fit for us.

Recently, Mana Medical approached us—not to tell us what to do, but to ask what we need.

They’re working on a new way to track how inflammation (or “flares”) impacts physical activity and recovery—taking some of the guesswork out of exercise. But before they move forward, they want to listen first.

And that’s why we’re having this conversation.

Why Traditional Exercise Advice Fails Us

For a healthy person, exercise follows a simple equation:

work out → muscles break down → body repairs → get stronger.

For people with chronic inflammation, that process doesn’t work the same way.

Take strength training. When you lift weights, muscle fibers tear, triggering micro-inflammatory events. The fibers repair so as to be able to cope with the demands next time. This is how strength is built up—but if your body already has a chronic background of inflammation, this small stressor can tip the scales into a full-body flare.

And it’s not just about what happens during exercise—it’s about what happens after:

• How do you recover when your body doesn’t bounce back like a healthy person’s?

• What if you have to go straight to work afterward—with no time to rest?

• How do you build strength when a single miscalculation can set you back for days?

We’re often left to figure it out ourselves—experimenting through avoidable pain, trial and error, and frustration.

What I’ve Learned from My Own Journey

For years, I felt like I was doing exercise “wrong.” I’d start a new routine, flare up, stop, and repeat the cycle. A bit like Sisyphus pushing his rock up a hill—only to get crushed every time it rolled back down.

Why was I forcing my body through something so punitive just to be “stronger” and “fitter”? By whose standards? The mainstream fitness industry? The latest wellness trend?

This is especially hard when you come from a competitive sports background—or even just an active lifestyle. If you’ve internalised the idea that strength is built through pain and exertion, it’s difficult to accept that this doesn’t apply to your body anymore.

One of the biggest shifts in my perspective came from Daniel Lieberman’s book, Exercise. It debunked the idea that we need to work out every day to be healthy.

• Humans evolved to move in cycles—balancing activity with rest.

• Modern fitness culture pushes constant progression, but that’s not how bodies naturally function.

That’s when I stopped chasing a one-size-fits-all fitness routine and started listening to how my body actually responds to exercise.

Because the key isn’t just exercising more—it’s exercising smarter.

Finding What Works: Lessons from the Community

Over the past year, I’ve spoken to many people in the InflamMed community who are trying to navigate these challenges. Some have found ways to build strength on their own terms—sometimes requiring huge lifestyle adaptations that aren’t realistic for everyone.

Take Nadine Heir, for example. She loves powerlifting, but to make it work, she’s had to reshape her entire life:

• Moving to Mexico provided her with better healthcare access

• Switching to freelance work so she can manage recovery time

• Finding a personal trainer who understands chronic illness

These changes have allowed her to train without compromising her health. (Listen to her podcast episode here.)

Others have found softer approaches, like yoga or pilates—not because they’re “easier,” but because they provide a different way to build strength that is less likely to trigger a flare.

And then there are some who never liked exercise to begin with.

For some, simply walking briskly to the bus stop, climbing stairs, or doing housework is more than enough activity. The idea of adding a fitness programme on top of everything else? It feels like a double punishment.

No matter our backgrounds though, we all share one thing:

We’re left to experiment on our own to find what works—with no roadmap, no guidance, and a lot of unnecessary pain along the way.

So, Is There a Better Way?

What if instead of pushing through generic exercise plans, you could:

• Recognise early warning signs of a flare before it happens

• Find the right type of movement for your body on any given day

• Balance exercise and recovery so you don’t keep crashing

• Build sustainable physical habits that work with your body—not against it

The key to long-term successful and productive exercise with chronic inflammation isn’t about doing more, pushing harder, or forcing consistency onto a body that cannot adjust to such methods.

It’s about learning how your body responds, working with it, not against it.

Because our bodies aren’t broken—they just operate outside the mainstream model. They require a different approach—one that demands flexibility, adaptation, and constant recalibration.

What Comes Next?

If this resonates with you, you’re not alone.

We’re starting a conversation about rethinking exercise for people with chronic inflammation—and we want to hear from you.

What have you struggled with when trying to stay active? What’s worked (or not worked) for you? Drop your thoughts in the comments or join the discussion in the InflamMed community—where we’re exploring new ways to make movement actually work for people like us.

Because the truth is, exercise should help you feel better—not worse. We need to learn how to listen to our bodies.

As we wrap up our Digital Health Revolution for Chronic Inflammation series, one thing has become clear: technology is reshaping how people manage chronic conditions. From tracking symptoms and monitoring vital signs to improving mental health and streamlining medical records, digital tools are making a significant impact.

However, access to these innovations remains a challenge. Many digital health solutions require costly wearables, subscriptions, or high-end smartphones—putting them out of reach for individuals from low-income backgrounds or those in underserved communities. True digital health transformation must not only be technologically advanced but also equitable and inclusive.

Chronic illness advocate has shared a list of recommended apps, wearables, and platforms that can support individuals living with chronic inflammation and autoimmune conditions. These tools highlight the power of technology in improving quality of life while also underscoring the need for patient-led, accessible innovation in health tech.

Read more

In this issue, we’re diving into some crucial conversations about structural inequality, labour, and the impact of work on our bodies. Let’s get into it.

What Caught My Attention This Past Month?

Structural Ableism and Fire Safety Failures

The recent Altadena fire tragedy is yet another stark reminder of how structural ableism creates and perpetuates social inequalities. Reports indicate that disabled residents were disproportionately affected due to inadequate infrastructure, inaccessible evacuation routes, and a lack of emergency preparedness that considers diverse mobility needs.

The Grenfell Tower fire in 2017 exposed similar deadly failures. 41% of disabled residents in Grenfell Tower lost their lives—a devastating consequence of ignored safety concerns and the absence of Personal Emergency Evacuation Plans (PEEPs). Despite recommendations from the Grenfell Tower Inquiry, the UK government has yet to fully implement mandatory PEEPs, leaving disabled residents across the country at risk.

• Disabled father and son left to burn

• 8 years after Grenfell and still no adequate support

Chronic Inflammation and the Toll of Work

How does our jobs impact our bodies? We are all familiar with musculoskeletal disorders and diseases resulting from long term exposure to chemicals or particulates. The impact of high-pressure and precarious working environments in white collar roles on chronic inflammation is becoming increasingly clear.

For a deeper look at the historical and contemporary impact of labour on health, if you can, visit “Hard Graft: Work, Health and Rights,” a Wellcome Collection’s exhibition. This powerful show uncovers stories of undervalued work, exploitation, and the long fight for workers’ rights.

• 📅 Hard Graft: Work, Health and Rights, Wellcome Collection, London, 19 September 2024 – 27 April 2025. Free entry.

Could a 4-day work week be the answer?

Iceland’s experiment with a four-day workweek has sparked global discussions about sustainability in employment—demonstrating that effectively reduced work hours can improve productivity. But does this always translate into a healthier workforce?

According to the report, 42% of workers reported decreased levels of stress in their private lives. Women, in particular, saw enhanced work-life balance and were more likely to benefit from reduced hours.

• Iceland’s Four-Day Workweek Experiment

The DEI Backlash: What’s Next?

DEI (Diversity, Equity, and Inclusion) programmes are facing increasing pressure, with major corporations rolling back initiatives under the guise of “efficiency” or “meritocracy.” Apple is doubling down on its DEI efforts, while Amazon has quietly dissolved key teams. What does this mean for workplace equity and inclusion moving forward? What does this mean for our community where raising awareness in workplaces has only just begun?

• The Defense of DEI: Apple vs Amazon

What We’ve Been Up To

Digital Health Revolution: Chronic Inflammation Series Wrap-Up

Our Digital Health Revolution for Chronic Inflammation series has almost come to an end! If you missed any instalments, catch up on the final pieces here:

• Can digital health bridge the gap in chronic care for low-resource settings? Read our interview with Muji Bekomson, founder of iLIVE Digital Health

• , patient advocate and entrepreneur, and I dive into why patient-led innovation is not just important—but essential.

This series will conclude with a curated list of apps, tools and platforms recommended from the series and community discussions.

Work-Life Balance: A Personal Reflection

A four-day workweek, meaningful work, good pay—sounds like a dream, right?

Six months into a new role—one that prioritises sustainability and balance—I should feel content. But the tug of war continues.

Is it possible to build a thriving career without sacrificing the very things that make life meaningful? I’m still negotiating that answer every day.

🔗 Read my latest reflection on the work-life tug of war

Thanks for reading! If any of you are like me (and live in London), I hope you are starting to feel better with more sunshine.

Until next time,
Natasha and the InflamMed Team

Read more

In this conversation, I sit down with chronic illness advocate Roi Shternin to explore the reality of digital health—what truly works, what doesn’t, and how technology fits into long-term chronic inflammation management.

We also discuss the challenges of innovating within a healthcare system that isn’t always built for change, and the potential of open models like OpenEHR to create more patient-centred solutions.

We’d love to hear from you—what digital tools have helped (or failed) you? Drop a comment below.

Here are a few tools we mentioned in the discussion:
📌 Woebot – A chatbot-based Cognitive Behavioral Therapy (CBT) app.
📌 Nerva – A digital programme for managing IBS symptoms.
📌 Ringconn – A comprehensive health-tracking platform.

Stay tuned—we’ll be sharing a follow-up post listing all the health tech tools featured in this series!

I hope you enjoy the conversation.

Access to quality healthcare remains a global challenge, particularly for those living with chronic conditions in low-resource settings where medical infrastructure is stretched thin. But can digital health tools fill these gaps?

For Muji Bekomson, founder of iLIVE Digital Health, the answer is a resounding yes. As a Black Nigerian entrepreneur and medical laboratory scientist, Muji has seen firsthand the barriers to care that many face—whether due to overburdened health systems, financial constraints, or geographical limitations. Her mission is to create a platform that transforms health management through accessible, proactive, and holistic support.

In this conversation, Muji shares how iLIVE’s Chronic Health Manager and the recently launched Femme by iLIVE are breaking down barriers to care—offering AI-driven, personalised health support that empowers individuals to track symptoms, identify triggers, and take control of their health, even in the most underserved communities.

Technology as a Lifeline: Why iLIVE Digital Health Was Created

What motivated you to launch iLIVE Digital Health?

Muji: Healthcare is a lifeline, but for many, it’s out of reach. In overburdened systems, doctors are stretched too thin to meet every patient’s needs, leaving millions without adequate support. I founded iLIVE Digital Health to change that—to create a bridge between traditional healthcare and everyday self-management.

For someone living with chronic inflammation, health isn’t just about a doctor’s visit—it’s about daily decisions. What should I eat today? How do I manage my stress? Why am I feeling this way? iLIVE was built to empower individuals with real-time, AI-driven health insights, proactive reminders, and a structured way to manage their health.

Especially in low-resource settings, where access to specialists is rare, digital health can be the difference between struggling alone and feeling supported.

The Chronic Health Manager: A Digital Companion for Daily Well-being

How does iLIVE’s Chronic Health Manager stand out?

Muji: Unlike many digital health tools, iLIVE is proactive, not reactive. Most health apps require users to take the first step—log symptoms, track data—but for someone dealing with chronic inflammation, brain fog, or fatigue, that’s not always easy.

iLIVE’s Chronic Health Manager engages first. It checks in daily, offering reminders, insights, and tailored recommendations based on the user’s condition, habits, and lifestyle. It’s not just tracking symptoms—it’s guiding users toward better health choices.

Key features include:

• Personalised diet, sleep, and stress management plans

• AI-powered insights that adjust as health patterns change

• Daily check-ins and reminders for medication, nutrition, and mindfulness

• A holistic approach—combining lifestyle, mental health, and medical support in one platform

For those in rural areas or countries with limited healthcare access, this kind of digital companion can be a game-changer. It brings consistent, structured health support to people who might otherwise only see a doctor when their condition worsens.

Femme by iLIVE: Addressing the Unique Health Needs of Women

What inspired the launch of Femme by iLIVE?

Muji: Women’s health issues are often overlooked—especially when it comes to hormonal imbalances, menstruation, and autoimmune conditions. Many women are told their symptoms are “normal” or dismissed altogether.

That’s why I created Femme by iLIVE—a women’s health platform designed to provide real, science-backed support for issues like:

• Hormonal health and inflammation

• Menstrual and reproductive health

• Stress management and mental well-being

Through weekly and monthly challenges, Femme helps women build sustainable health habits, offering a community-driven approach that fosters education, empowerment, and self-care.

For women in low-resource settings, where women’s health concerns are often underfunded and under-discussed, Femme provides accessible, digital-first health education and guidance.

AI-Powered Personalisation: Making Digital Health Work for Everyone

How does AI enhance personalisation on iLIVE’s platform?

Muji: One-size-fits-all healthcare doesn’t work—especially for chronic illness. AI allows us to tailor iLIVE’s recommendations to each user. It analyses health data, symptoms, and habits to provide meaningful, adaptive insights, adjusting as users’ patterns evolve.

This is especially powerful in underserved areas, where people don’t always have access to specialists. Instead of waiting for a doctor to identify a pattern, iLIVE’s AI can flag trends early—helping users take action before symptoms escalate.

For example, if a user experiences consistent morning fatigue, iLIVE might suggest:

• Adjusting their evening routine for better sleep

• Tracking dietary habits that could be contributing

• Encouraging a mindfulness or breathing exercise to improve energy levels

By using AI to personalise healthcare, we’re making preventative, proactive care more accessible—no matter where someone lives.

The Challenges & Future of Digital Health in Low-Resource Settings

What challenges have you faced in bringing digital health to a global audience?

Muji: Adoption. People trust what they know, and in many communities, traditional healthcare is deeply ingrained. There’s also skepticism—concerns around data privacy, accessibility, and whether AI-driven tools can truly provide “real” healthcare.

That’s why education is key. iLIVE isn’t here to replace doctors—it’s here to fill the gaps. To support self-management, prevent unnecessary hospital visits, and empower people to make informed choices about their health.

Another challenge is the lack of infrastructure—many communities don’t have reliable internet access or smartphones. That’s why we’re exploring low-data solutions, ensuring that even in places where digital tools are limited, people can still access basic, life-changing health support.

Final Thoughts: The Future of Digital Health

What advice would you give to aspiring health tech entrepreneurs?

Muji: Believe in your mission. Health tech isn’t easy—it takes persistence and a deep commitment to the communities you’re serving. Surround yourself with mentors, advocates, and innovators who share your vision.

Most importantly, never lose sight of why you started. At iLIVE, we’re not just building a platform—we’re building a future where everyone, regardless of location or background, has access to the tools they need to live a healthier life.

Recent Updates:

Since this interview, iLIVE Digital Health is now fully focused on improving women’s health, the platform now offers a women’s health support channel and a premium membership program for women looking to manage their lifestyle, reproductive health, and mental health.

To find out more, you can find Muji on Linkedin at: https://www.linkedin.com/in/mujibekomson/

Welcome to the second instalment of our Digital Health Revolution for Chronic Inflammation series. This time, I had the privilege of sitting down with Pav Rai, the Co-founder of Kuma Health, to learn more about the transformative work they’re doing in autoimmune disease management.

Pav and I had crossed paths before, but this conversation offered something more profound. She shared the story of Kuma Health’s beginnings, the driving purpose behind their AI-powered solution, and their vision for a future where managing autoimmune conditions becomes a personalised and empowering experience.

I think you’ll find her insights not only informative but deeply inspiring. It was very encouraging to hear how much they had listened to communities such as ours, as she expressed a real understanding of the challenges we face.

I hope you enjoy this interview as much as I did.

Best,
Natasha

PS: Don’t miss the part about how Kuma Health is working with communities to co-design its solutions.

The last newsletter of 2024 is landing in your inbox now, 10^th Jan 2025. A tad late! Well, that’s how it is. We work on Crip Time at InflamMed, meaning that we work to the rhythm of our health, and sometimes it does not quite align with the Gregorian calendar. We have decided not to stress about it.

Gwyneth Paltrow launched her newsletter goop back in 2008. The story goes that she only ever wanted to share her tips about lifestyle and wellness with us. Her eyes were soon opened to the business potential of her platform. And the rest is… Goop, Inc —a brand and business valued to about a $ ¼ million today. Lawsuits and warnings from medical bodies regarding health claims have done little to slow down Goop’s growth.

Paltrow has inspired many celebrities to engage in similar wellness and health business ventures, all facilitated by social media platforms. When Elle Macpherson praises The Super Elixir™ for her good looks, the iconic ingestible beauty green powder she developed, it may motivate some to invest, and others to smirk “Money wasted but no real harm done.” However, when WelleCo’s founder shares overcoming breast cancer with alternative therapies, cherry-picking information1 about her health journey, something else is happening.

We can only be pleased for her recovery and good health, and personal choices about one’s health are to be respected. But celebrity, health and business make a very uncomfortable mix. Misinformation, if not disinformation, can easily seep in and public health has been shown to suffer.

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What Caught My Attention This Past Month?

1. Health is a hot topic! Don’t we know. Health-related podcasts are now competing with business and entrepreneurship podcasts for the position of the third most popular category.

   Steven Bartlett, host of the Diary of of CEO, one of the most listened to podcast across most of the English speaking world, has decided it was time for him to combine both to grow his audience— earnings from his podcast for 2024 are expected to reach £20M. However a BBC World Service investigation shows that the Dragon’s podcast contributes to the spread of health misinformation by leaving controversial health claims about diets, cancer and vaccines among others, little to unchallenged, defending his stance as wanting to “present some of the other side" as "the truth is usually somewhere in the middle.”

   Podcasters may claim they are sharing information, but they are actually sharing harmful misinformation, says Dr David Grimes from Trinity College Dublin.

   Mr Bartlett’s motives are probably purely financial. Cecile Simmons, a researcher in disinformation, points to studies that have shown health and wellness misinformation content grow audiences.

   

   He has financial stakes in health and wellness companies. And once you have financial interests, you have then the further interest in focusing on health and nutrition," says Ms Simmons.

   Health-related clickbait content with scary titles does really well online with the algorithm amplifying that," she said.

2. Imani Barbarin from crutches_and_spice offers a sharp analysis how the U.S. healthcare system frames disability by shining a light on the circumstances that led Luigi Mangione, a seemingly privileged young white man suffering from chronic pain, to fatally shoot UnitedHealthcare CEO Brian Thompson last month. Business and healthcare just do not mix.

   This system would drive anyone mad, and that’s exactly how we need to position this conversation…

3. The continued blurring of health and lifestyle topics is not all grim and grey though. Chronic inflammation is now getting mainstream media attention. This article in The Telegraph is a good entry read with clear and concise information distinguishing acute from chronic inflammation.

4. The Financial Times reports on UK employers actively seeking neurodivergent workers, such as those with autism or ADHD, to gain a competitive edge, recognising unique or heightened skills. Isn’t that good news? Adaptation to market needs, a new workforce make-up, reassessment of behaviours over hard skills? How will recruitment methods rise to the challenges? Will we see the rise of neurodivergent elites or sweatshops? Which arguably both already exists—think medics, Silicon Valley top (and low) dogs and university research staff. An exciting trend to closely watch.

What We’ve Been Up To

We launched our Digital Health Revolution For Chronic Inflammation series with Mark Nicoll, founder of paincation. Mark shared his health journey with Crohn’s disease, but most importantly to him now, how it has lead him to harness upcoming technology to disrupt pain management care with mixed reality.2

Coming up for the second opus, an interview with Pavendeep Rai, Kuma Health Co-Founder, where she will be discussing how AI companions are revolutionising autoimmune disease management with personalised, data-driven support.

We continue to read ’s Crip News and thank him for his weekly accessible digest of disability arts and news. We encourage you to subscribe.

Crip News

A weekly roundup about disability arts and politics.

By Kevin Gotkin

That’s it for now. Until next time!

Natasha and the InflamMed Team

For many of us living with chronic inflammation, the physical pain often intertwines with emotional isolation—a cycle that’s challenging to break. Enter Paincation (1), a revolutionary mixed-reality (2) platform designed to foster connection and holistic well-being for individuals navigating the complexities of autoimmune conditions.

In this interview, we sit down with the visionary founder, Mark Nicoll, of Paincation to explore how their personal journey with Crohn’s disease shaped the creation of this innovative tool. From navigating years of undiagnosed pain to pioneering a new way of addressing the intersection of physical and emotional health, the story behind Paincation is one of resilience and determination.

We’ll dive into how mixed reality is redefining chronic pain support, the challenges of creating tech solutions for health, and the exciting future ahead for Paincation. Whether you’re curious about the role of technology in health care or looking for new ways to manage chronic pain, this conversation is sure to inspire.

1. Can you share a bit more about your personal journey with chronic inflammation and illness and how it inspired the creation of Paincation?

Mark: I started noticing something wasn’t right with my health when I was about 18—stomach pains, nausea, the works. Over the next decade, these issues worsened dramatically. By the time I was 30, I’d endured 10 years of excruciating pain, still undiagnosed with Crohn’s disease.

One morning, after calling in sick for work—something I had never done before—I overdosed on painkillers in desperation. Somehow, I managed to drive myself to A&E, crawling on my hands and knees across the car park. I pulled myself up to the front desk and said, “I don’t feel that great.”

I woke up six weeks later in a hospital bed surrounded by people. Alongside an overdose, I’d developed sepsis, a bowel-bladder fistula, and a slew of other complications due to untreated Crohn’s.

That wasn’t my last brush with this nightmare. A decade later, I found myself in the same situation again. However, through trial, error, and self-advocacy, I finally learned to manage my condition. Quality sleep, nutrition, and even small amounts of exercise transformed my health.

This lived experience—the pain, isolation, and hopelessness—was the foundation for Paincation.

2. In just a few words could you explain what Paincation is and who it is for?

Mark: Paincation creates safe, mixed-reality spaces where people with autoimmune conditions can connect, share experiences, and improve their physical and emotional health together.

3. What was the moment or experience that made you realise a solution like Paincation was necessary?

Mark: The turning point came through conversations with others in similar situations. People struggling with pain often talked about how isolation compounded their challenges.

For many, attending in-person support groups wasn’t feasible—whether due to flare-ups, fatigue, or extended periods of illness. The stories I heard echoed my own: pain leading to isolation, which in turn led to loneliness and, in severe cases, depression or self-harm.

I knew there had to be a better way—a way to create community, even from the confines of a hospital bed or home.

4. Why did you choose virtual reality to combat loneliness and isolation among those with chronic illnesses?

Mark: We’re at the end of the mobile phone era; it’s been 15 years since the iPhone was launched. People are app fatigued—they’ve seen it all before.

New platforms like mixed reality offer fresh ways to create meaningful experiences. Just as the iPhone enabled Instagram and Uber, platforms like the Apple Vision Pro will unlock new possibilities for health-focused solutions.

With Paincation, mixed reality allows users to interact within their natural environments, combining the benefits of VR with the comfort of home. This is more than technology—it’s a new way to empower people with chronic conditions.

5. How does Paincation address the cycle of physical and mental pain?

Mark: While Paincation isn’t a medical product and doesn’t claim to directly reduce pain, it does offer tools for holistic well-being. For instance, research shows that gaming can act as a drug-free painkiller, providing temporary relief by shifting focus; interview a hundred 25 year old women with endometriosis and they will tell you they use computer games — of all kinds — to take their minds off of their physical and mental pain.

Paincation builds on this idea, combining community support, light physical activity, nutrition guidance, and sleep optimisation. These elements create a comprehensive well-being system tailored to autoimmune conditions.

For those needing additional help, our seamless therapy marketplace connects users with psychologists, sleep coaches, and nutritionists. This is all accessed seamlessly from within the Apple Vision Pro Paincation app.all from within the app.

6. What’s next for Paincation? What excites you most about the future?

Mark: The future is ambitious. Building a platform like this takes time, resources, and a team that believes in the vision. We’re gearing up for a pre-seed funding round to bring Paincation to life.

I’m most excited about the possibilities that Apple Vision Pro and similar technologies will unlock. This is just the beginning.

1. https://www.paincation.com/

2. What is Mixed Reality (MR)?

Needless to say that keeping meticulous records of our miseries is often the last thing on our mind, even if we very well know how highly valuable this information is to our medical team. The responsibility falls on us, who else! Should we adopt 24hr remote monitoring?

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Yet, here we are—living in a world where the tech and wellness industries are racing to fill this gap, meeting our growing appetite for health solutions beyond the traditional system. Digital health tools promise to be allies, potentially game-changing ones, in our journey toward better self-management. But with a sea of apps and platforms making bold claims, how many truly serve those of us with chronic inflammatory conditions?

From AI companions to virtual or mixed reality therapies, these tools offer possibilities to complement traditional healthcare and provide holistic well-being. But how practical are they, and how well do they address our unique needs?

This series, Digital Health Revolution For Chronic Inflammation, aims to introduce our community to some of the most innovative tools designed for chronic inflammation care. Whether you’re looking to track symptoms, ease pain, or simply feel more empowered, we’ll spotlight solutions that could make a real difference in your daily life.

Inspired by recent conversations on our podcast with Dr. Raphael Micheroli,1 Dr. Karim Sadid and Dr. Chris Wincup,2 it’s encouraging to see how thoughtful collaborations between doctors and technology innovators are shaping tools designed to support—not replace—face to face or human to human care. This series goes deeper into the stories behind the tools and the people creating them.

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What to Expect

• Q&A with Mark Nicoll, Paincation Founder: Learn how mixed reality (and VR) therapies are helping manage chronic pain while building emotional resilience.

• Interview with Pavendeep Rai, Kuma Health Co-Founder: Discover how AI companions are revolutionising autoimmune disease management with personalised, data-driven support.

• Q&A with Muji Bekomson of iLIVE Digital Health: Explore how digital platforms are transforming holistic care for chronic conditions.

• Gizmos and Grit with Roi Shternin: Join a candid discussion on health tech tools and wearables, their strengths and challenges, and living with chronic illness.

Throughout the series, we’ll share honest conversations and actionable insights to empower your journey with chronic inflammation. Stay tuned on Substack for upcoming instalments—we can’t wait to embark on this journey with you.

Understanding them requires stepping back, seeing the connections, and examining the broader systems of care—or the gaps and failures within them—that shape these decisions. Assisted dying, seeking medical help or navigating medication aren’t isolated choices; they’re part of a larger, interwoven fabric of humanity and care. We need to hear multiple stories, multiple perspectives.

And yes, sometimes it requires that extra bit of hard work, like willingly gulping down a spoon of cod liver oil, let alone a second! The announcement of the new US president elect surely tasted like one.

What Caught My Attention This Past Month?

The Assisted Dying Bill Passed - This is monumental. It raises important questions about care, choice, and the societal frameworks that support—or fail to support—those in need.

Hannah Betts' recent article on SSRIs, depression, and suicide is a must-read for anyone navigating mental health or supporting someone who is. ’s nuanced take challenges us to rethink the way medication and care are approached.

• On a similar note, “Hey! Remember Sad Blob?” from our editor, brings us a personal and reflective narrative on her journey with Sertraline, an SSRI commonly prescribed for depression, PTSD, and anxiety. She says:

  “Taking Sertraline has not become more significant or revelatory of anything more than taking Cetirizine when pollen is high.”

3 Days of Healing, Hope and ‘Snake Oil’ With the Wellness Elite highlights the growing allure—and pitfalls—of the wellness industry, especially for those who feel underserved by traditional healthcare. While the Florida event drew criticism for its promotion of pseudoscience and high-ticket remedies, it also underscored the hunger for accessible, holistic health solutions. Seeking innovative approaches and maintaining critical discernment is a tightrope to walk.

“Skepticism of information sources is healthy, but wholesale disregard of scientific discovery is not, and ‘trust your body’ is insufficient as a sole metric of meaningful health decisions.”

UnitedHealthcare CEO Brian Thompson shot outside a Manhattan Hilton (New York City, USA). UnitedHealthcare CEO Brian Thompson’s murder has stunned many. The chilling detail: shell casings inscribed with the words “delay” and “deny.” Reactions have ranged from outrage to grim humour, reflecting the frustrations with for-profit healthcare. In her incisive piece, explores her personal ordeal with health insurance denials and reflects on the broader implications of a system prioritising profit over care. Her poignant question resonates:

“What happens when those most impacted by systemic injustice lose faith in reform and demand accountability in unimaginable ways?”

What We’ve Been Up To

Reflections on Assisted Dying: After a candid discussion with discussing the motives behind the End of Life Bill and her personal experiences with chronic illness, it became clear InflamMed needed to support her story. Shabnam shares her journey with chronic pain and raises critical questions: Are systemic healthcare failures coercing the vulnerable? How might biases in care shape decisions about life and death? Why must we redefine dignity to value interdependence and all lives?

The key message, which Shabnam puts so eloquently herself:

“Let’s talk about living well first, before talking about dying well.”

LUCKY, lucky – An Immersive Journey: The last chapter of ’s BED 6 story is live! This collaborative piece brings Ebony’s poignant words to life with ’s prints and ’s voice.

Ebony’s story of resilience and reconnection challenges us to rethink recovery, support, and community inclusion. 📢 Don’t forget to unmute!

Stay tuned for the Digital Health Revolution for Chronic Inflammation series launching on Tuesday.

Let us know your thoughts on the stories and questions raised in this newsletter. Challenge us or cheer us on. Because if we can’t say it at Christmas, hey?!

Until next time,

Natasha and The InflamMed team

P.S. If you found this newsletter meaningful, share it with someone who might need to hear these stories.