Live Well With Chronic Illness

22/07/2025

The Flare Rollercoaster - Chronic Illness Isn’t Linear

One day I’m working, running my business, and seeing friends. Juggling all the balls.

The next day, I might struggle to lift my phone or speak a full sentence without needing to rest.

That’s the reality of chronic illness—especially conditions like ME/CFS, fibromyalgia, Long Covid, MCAS and Lyme Disease.

Health isn’t linear. Energy isn’t reliable. And “flaring” can be triggered by the smallest things—noise, movement, stress, or just trying too hard yesterday.

People around me are often confused by this. I often hear “But you were doing ok yesterday?”

Yes. And today I’m not doing ok.

It can be hard sometimes not to perceive that as some sort of failure. But it isn’t. It’s how my body needs to cope with the illness that it is living with.

This can lead to a lot of shame, confusion, and also disbelief from those around us

People struggle to understand that your illness can change from day to day, and it can lead to people doubting you, and wondering if your illness is somehow not ‘real’.

And that is a truly devastating place to be. Where you feel judged and disbelieved.

So if you’re someone who has to cancel, change plans, or rest suddenly:
You are not unreliable.
You don’t have to justify your needs.
You deserve compassion—especially from yourself.

We need to normalise the ups and downs of chronic illness, and stop expecting consistency from human bodies, which are by their very nature, changeable and unpredictable.

And most importantly, please remember when you are in a flare, it doesn’t mean you are going backwards. You are doing the best you can, and your body is asking for rest and time to heal. Healing is not linear, there will be ups and downs, but you can still continue to support yourself and your body and come out the other side.

17/07/2025

In June I attended a Peri-Meri Menopause Wellbeing event in Lincoln, organised by the lovely people at Everyone! I had a stand, and I did a talk about foods that can support you with menopause.

No photos of the event, because I NEVER remember to take a photo of myself at these things!! 🤦‍♀️

I had such a lovely day, and I was really thrilled to receive this wonderful feedback from one of the ladies who attended my talk.
‘I attended a session on Menopause & Nutrition at a recent event and found it very interesting and enjoyable. The information was very helpful, and we were given some practical ideas to try. I learned a lot about how eating good food can help with the symptoms of menopause and much more besides. I can highly recommend it!’

I offer inspiring talks on a range of topics, so if you have a wellbeing event and would like me to give a talk, why not get in touch?!🤩

16/07/2025

The Quiet Grief of Chronic Illness - Mourning the Life I Thought I’d Have

Today I want to talk a bit about something that is not often discussed.

Chronic illness grief.

Chronic illness doesn’t just change your body—it reshapes your entire life.

What I wasn’t prepared for was the grief I experienced when my life changed overnight and I became ill.

I feel enormous grief at missing out on milestones, celebrations, parties and meeting up with friends. I feel huge grief at watching friendships and relationships fade because I couldn't keep up, and I was no longer the same person. I feel unimaginable grief at being forced to let go of my career, and lose the job of my dreams.

I grieve the loss of my hobbies and things that brought me joy, like holidays, meals out, concerts and shopping trips with friends.

More than anything, when I became ill, I experienced a daily grief, waking up each day and facing limitations that I never asked for.

I’m still grieving the version of me that I had imagined I would be. The life that I had imagined I would live. The things that I’ve missed out on over the past 7 years. The holidays I might have had, the friends I might have made, the career I might have had, the financial stability that I’ve lost.

The trick that I’ve found is that you can mourn the life you once had, and still find joy in living the one you have now.

The two are not mutually exclusive. It’s ok to feel sad for what you’ve lost. But it’s imperative that you replace it with something else. That you make the most of this new life in whatever way is still possible and accessible to you.

Chronic illness forces us to rewrite our story.

That takes a kind of strength and determination that most people will never understand.

And it’s okay if you’re still learning how to hold both the loss and the life that remains.

10/07/2025

Today is Chronic Illness Awareness Day

In the UK, over 15 million people live with a chronic illness — that’s nearly 1 in 4 of us. These are long-term conditions that often go unseen, yet they shape every part of a person’s life.

Chronic illness costs the UK economy over £100 billion a year in lost productivity, healthcare needs, and informal care.

But the cost to the individuals — emotionally, physically, and financially — is far, far greater.

Missing out on family gatherings and fun events with friends, losing hobbies, losing careers, experiencing medical trauma, living with daily pain and energy crashes, facing social isolation, and living in financial difficulty, the impact is both wide-reaching and deeply personal.

These individuals are bearing the burden physically, emotionally, and financially, every single day.

Many are navigating their illnesses while trying to live, work, and often caring for children or other family members.

Beyond the numbers is a powerful truth: people with chronic illness are some of the most isolated, excluded, and vulnerable people in our society. On top of extreme physical symptoms that make their lives miserable, they face societal criticism and judgement, and vilification by the media and lately by government too.

They are branded lazy, ungrateful, selfish, burdensome, shirkers.

On the contrary, the people with chronic illness that I work with are some of the most resilient, wise, compassionate and resourceful individuals I’ve ever met. You have no choice but to become so much more than the average person when it comes to living daily with unimaginable suffering, and somehow finding the will to go on.

We develop an emotional intelligence and an awareness far beyond what most people will achieve.

This is why I do the work I do — supporting and advocating for those navigating life with chronic illness.

Whether it’s signposting people to resources, helping them uncover small changes that reduce symptoms a little bit, or teaching tools that can help them to cope with the emotional strain of pain and illness. Sometimes, it’s simply helping them to feel seen and understood. My mission is to walk alongside this community with every ounce of compassion and care that I have in me – because I know how much they suffer. I know what it feels like to be stigmatised and judged. I know what it’s like to be so ill that you can’t get out of bed, not just for a day or two, but for years.

It's devastating, soul-destroying, and heart-breaking, and it’s made so much worse by the lack of understanding from others.

We must work toward a society that recognises and values every single person, and which offers support and compassion to every illness, not just those that we ‘understand’.

07/07/2025

Today I am celebrating! 👏

I’m super-excited that I have passed a course in Environmental Medicine from the College of Naturopathic Medicine.

Even before I started studying to be a Health Coach, 3 years ago, this was the course I REALLY wanted to do! It was always my plan to go on to this post-graduate course afterwards.

This was always where my real interest lay – in the way our environment is impacting our health, and how the toxins we are exposed to daily are affecting us.

I have my own personal lived-experience of how toxicity drives chronic illness, and it’s something I particularly want to help my clients to understand.

Getting toxins out of our bodies can make a huge difference to how we feel. I am testament to that.

It's taken me 3 years, but today, I’ve finally done it! I’ve finished the course and passed the exam.

The course, taught by internationally renowned environmental medicine specialist, Dr Joseph Pizzorno, was deeply fascinating – and worrying.

In over 16 hours of lectures, Dr Pizzorno delved deeply into the research which shows toxic chemicals and heavy metals are implicated in every chronic illness, from diabetes and cardiovascular disease, to infertility, Alzheimer’s and autoimmunity. We are all being affected.

But this is not about fear-mongering. It’s about making informed choices.

This is something I’m so passionate about – the more we understand about how our environment impacts our health, the more we can protect ourselves and our loved-ones.

I’m going to be teaching a course for Goldleaf Therapy Training on toxins and how they impact our health, particularly our mental health, in September this year. I think it’s something that all mental-health professionals should know about.

If you are interested, I’ll put the link to the course in the comments.

01/07/2025

🧠 Mental Health & MCAS: When Your Own Body Feels Like a Threat

Living with Mast Cell Activation Syndrome (MCAS) means more than managing allergic reactions—it means living in a body that feels constantly unsafe. And that can take a huge toll on your mental wellbeing.

Over 80% of people with MCAS experience anxiety, and 25% are diagnosed with clinical depression.
(Source: Afrin et al., Characterization of MCAS, 2017)

But this isn't just about the psychological effects of chronic illness. The chemical mediators released by mast cells—especially histamine, prostaglandins, cytokines, and tryptase—directly affect the brain and nervous system.

🧪 Histamine, in particular, acts as a powerful excitatory neurotransmitter. When it floods the system during an MCAS flare, it can push the brain into a state of hyperarousal—triggering panic attacks, intrusive thoughts, agitation,

🫀 Panic attacks

💭 A sense of terror or doom

😔 Sudden mood drops

😠 Agitation, anger, or irritability

And often, these mental shifts don’t match the person’s usual temperament. It’s not “just anxiety.” It’s biochemical overload.

In severe cases, people describe feeling suicidal during flares, only to stabilize once the reaction passes.

This isn’t ‘wrong thinking’—it’s mast cell chemistry. The brain and nervous system are, in effect, being poisoned by their body’s own immune response.

When you add to this, the fear and uncertainty of unpredictable reactions, the severity of pain and symptoms, pushing through fatigue, facing medical disbelief, often a lack of support and understanding from those around them, and for many, the loss of their careers, financial stability, and nourishing hobbies that brought them great joy, you can understand how MCAS takes a huge toll on a person’s mental health.

This month, if you know someone who lives with MCAS, please understand that their mood and their behaviour may be part of their MCAS reactions, and consider how you can support them during a flare.

30/06/2025

Please take a few minutes to watch this incredible video put together by some of the Mast Cell Action community for International Mast Cell Disease Awareness Month. 🙏 It makes me cry every time 😪

28/06/2025

This one is for you if, like me, you live with chronic pain. ⚡️

Last week I had the opportunity to record yet another inspiring conversation, this time about living a good life with chronic pain, with the wonderful Shabnam Rakhiba.

Shabnam is a trauma-informed coach, chronic illness mentor, and the founder of Chronic Wellness Lounge. Shabnam lives with chronic pain herself, so she really gets what it means to live in a body that doesn’t always cooperate with you! Her work is all about helping women move from survival mode to a life that feels spacious and meaningful, on their terms.

Shabnam is an amazing disability inclusion consultant & passionate health equity advocate. She’s also the co-author of the recently published book 'Learning Through Pain', a powerful resource for women reclaiming their lives alongside pain, which I can highly recommend.

Why should you listen? Because Shabnam is just a fountain of true, deep, compassionate wisdom about the reality of living with pain, and how to turn that into something meaningful, as she has done with her own life.

The word ‘inspirational’ is often bandied about freely, but in this instance it is truly deserved. Shabnam has not only faced the depths of despair at her own crippling pain and overcome it - forging for herself a life of meaning and joy as a mother, wife, business owner and coach - she now uses her experiences to support other women to manage living with chronic pain.

She is so passionate about how women are disadvantaged by our health care system, and how their voices are not heard. Their pain is not recognised and it’s not being adequately treated.

She truly is an amazing advocate and support for women in pain, and if you, or anyone you know, lives with chronic pain, then I strongly recommend you have a listen!

(And although Shabnam only works with women, if you are a man living with chronic pain, I’m sure you will find something of value here too.)

In this conversation, Deborah Bircham is joined by the inspirational Shabnam Rakhiba, who has not only faced her own crippling pain and overcome it - forging...

27/06/2025

Eating Out with MCAS: When Food Feels can be a Threat

For many living with Mast Cell Activation Syndrome (MCAS), eating out isn't just hard—it’s impossible.

Dining out can feel like a game of Russian roulette.
⚠️ Cross-contamination.
⚠️ Unlisted ingredients
⚠️ Cleaning sprays in the air.
⚠️ A dish cooked in reused oil.
⚠️ Even someone’s perfume at the next table.

According to The Mast Cell Disease Society’s 2019 patient survey, over 70% of people with MCAS say they always call ahead before dining out, and many avoid restaurants entirely because the risks are just too high.

What’s more, it’s not just restaurants.
🥪 Leftovers are often off the menu too—many people with MCAS react to histamine buildup in food. That means no packed lunches, no cold snacks, no picnic at the park.
Histamine naturally rises in food over time—even a few hours in the fridge can be enough to trigger a reaction for some.

📉 When I was at my sickest, I spent years unable to eat even a snack outside of my house. Every meal had to be freshly cooked in a controlled, scent-free space with only my handful of “safe” ingredients. That isolation wasn’t just physical—it was social and emotional, too.

Research backs this up:

Afrin et al. (2017) explain that patients with MCAS often exhibit intolerance to even trace levels of histamine-rich or aged foods.

Maintz & Novak (2007) found that histamine builds up significantly in leftovers, fermented, or processed foods—posing serious risks for histamine-intolerant or individuals with MCAS.

Yet often, when those who live with MCAS try and explain their dietary needs, they are made to feel as though they are making it up, or that they are being a nuisance.

The fear and embarrassment of having to speak up and ask for food adjustments, and the stigma and judgement that this can bring, is another barrier to eating out.

Reacting to foods and struggling to process histamine in foods is a very real issue for those living with MCAS, and it affects every aspect of our daily lives.

🧡 This , I want to raise awareness of these barriers, and hopefully enable those living with MCAS to experience greater tolerance and understanding.

23/06/2025

Contact Stella's Falabellas and friends to book your place- discount available for the first 6 people to book, so don't delay! I'm looking forward to seeing you there!

Don't forget to get your selves booked in for your wellness Sunday. As a special offer we are offering the first 6 people who contact me a reduced price of £25 per person

23/06/2025

All this month, I am sharing information to raise awareness of Mast Cell Activation Syndrome.

I’ve been largely drawing on my own lived experience of this condition, and the experiences of my clients too.

However, I also work for Mast Cell Action as their Community Support Coordinator, and part of my role there is to collect the stories of community members for the Our Stories webpage.

Today, I want to share those stories with you all, so you can read some of the devastating experiences that people with MCAS face, including the many stories of children with MCAS in our community.

You can read these stories here https://www.mastcellaction.org/patient-stories

These stories are only short, it will only take a few minutes of your time to read one or two, but I would love to ask you to take that time today and meet one or two of these inspirational people who have fought so hard and overcome so much.

These stories, each of these people’s lives, their struggles, their determination, and their courage, are why we work so hard to help people with MCAS.

If you can do anything to support Mast Cell Action with their work, then please do.

You can donate here.

Every single penny makes such a big difference.

Thank you.

20/06/2025

Working with MCAS

In addition to the devastating personal toll of living with MCAS, there is also a societal and economic toll.

In a survey by Boyden J. J. et al. (2014) presented at The Mastocytosis Society 50% of people with MCAS required accommodations such as remote work or flexible hours in order to manage workplace triggers and stay safe. Office kitchens with scented washing up liquid, co-workers’ perfumes, even second-hand smoke from a building entrance can trigger systemic reactions. And because MCAS is “invisible,” many employers underestimate the risks.

Employees are often battling silently every single day to keep going in the face of repeated exposures to substances at work that make them very unwell.

If everyone was made to work in an environment that triggered systemic inflammation, pain, and medical symptoms, it would be considered unacceptable.

Yet, people with MCAS have to suffer in silence.

Many with MCAS are too unwell to work at all, and this has a devastating impact on their financial security and their families' lives.

Not only that, but losing your career is a heartbreaking blow, and has huge consequences for people’s self-esteem and self-worth. Many people living with MCAS have talents and passions that they are unable to explore or fully realise, and this has a crushing effect on their mental wellbeing.

Having MCAS can often be a significant barrier to employment, to financial security, and to fulfilment and life-satisfaction.

The lack of awareness of the condition only makes this worse, as it is very hard for someone with MCAS to advocate for their needs in the workplace, when no one understands what MCAS is.

You can find out more about advocating for yourself at work with this ‘Navigating the Workplace with MCAS’ Guide on the Mast Cell Action website. https://www.mastcellaction.org/navigating-the-workplace-with-mcas