Live Well With Chronic Illness

15/11/2025

I'm so pleased to share that Mast Cell Action are proud to be part of the Overlapping Illnesses Alliance, and we are really excited about the change that this could bring to millions of people living with MCAS, PoTS, ME/CFS, EDS/HSD, and Long Covid.

The Alliance is hosting a meeting in Westminster for MPs on 25th November, and it's so important that we get their support and the chance to talk to them about the issues that people with these conditions face.

If you feel able, you can follow this link and use this easy template to ask your MP to attend.

Please take 2 minutes to send this email to your MP to make them aware of the Alliance and ask them to come and meet us!

Thank you so much!

Today, Mast Cell Action are proud to be part of the launch for the Overlapping Illness Alliance. A coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions. Check out our website: https://www.overlappingillnessalliance.org.uk/

The Overlapping Illness Alliance is hosting a drop-in session at the Houses of Parliament on Tuesday 25 November to inform MPs about these illnesses, and what they can do to support. Mast Cell Action will be there. Ask your MP to attend using our simple form: https://dub.sh/OIAdropin

13/11/2025

13/11/2025

I work with people living with complex chronic illness, and the food that they eat, in particular the quality of that food, is something that can make a huge difference to their health.

My clients often struggle with processed foods, especially food that is high in histamine. There are low-histamine meat suppliers available online, but it is extremely expensive, with huge minimum orders which many of my clients can't afford.

I always suggest to my clients that they find a local butchers, and buy their meat fresh from them. Building a good relationship with a local meat supplier means you know exactly what you are eating, and you can get advice from them because they know their own products best.

With that in mind, I need to shout out to Hannah and the wonderful team at Mill Farm They have been absolutely amazing at supporting me, and because I was able to get fresh meat from them on the day of delivery, I was able to keep eating meat when many others with MCAS struggle.

And today, when I put my Christmas order in, Hannah immediately replied to ask whether I wanted my pigs in blankets gluten free. Which I had forgotten to say! But she remembered that I am gluten free. That's service for you!

And for people living with complex, chronic health conditions, it's this kind of relationship with your food supplier that can make a huge difference to your health.

So, thank you Hannah! And, yes, please - gluten free pigs in blankets. Plenty of them! 😉😂

13/11/2025

When Masculinity Collides with Illness — Identity, Strength, and the Struggle to Let Go

How cultural expectations of masculinity and strength conflict with chronic illness and healing.
“For many men, strength isn’t just a quality — it’s part of who they are. But what happens when your body stops playing by those rules?”

Men often define themselves through physical strength, productivity, and the ability to “provide.”

Chronic illness threatens those pillars of identity, leading to shame, guilt, and a crisis of self-worth.

Many men try to heal using the same logic they’ve always used — to push harder, fight through, and resist rest.

But true healing often requires the opposite: slowing down, surrendering, and self-compassion

Healing asks for a new kind of strength — the courage to let go of who you were, so you can become who you need to be now.

11/11/2025

Silent Suffering — The Stigma and Shame Men Face When They’re Sick

The emotional isolation, shame, and silence men experience around illness and pain.

“Men with chronic illness often suffer twice — once from the illness itself, and again from the silence they’re trapped in.”

Many men feel deep shame about being sick — it can feel like a personal failure or weakness.

They struggle to confide in friends or family, fearing judgment or pity.

Mental health often declines as men try to “push through” their symptoms.

This silence means they rarely get the emotional or practical support they need.

If you’re a man living with chronic illness: please know that you’re not weak, you’re human. Speaking up about your pain doesn’t diminish your strength; it’s the most courageous act you could take.

10/11/2025

I'm sad I won't be at this one, Market Rasen a bit too far, but if you are local, I highly recommend you pop along. 🥰

07/11/2025

Finding Hope In Difficult Times - A Path to Healing

In this chat Caroline Rose and I share our insights on navigating life’s most challenging moments and what it means to find hope when things feel impossible.

I hope that this conversation will remind you that you are not alone in your chronic illness journey, and that hearing about the small steps toward self-care, presence, and connection that we have taken can inspire you to do similar things for yourself. It doesn’t have to be anything big or grand, just small daily practices that nourish us can make a big difference.

06/11/2025

The Hidden Struggles — Why Men with Chronic Illness Are Often Overlooked

Men’s chronic illness is invisible because chronic illness is culturally coded as a “female issue.”
“When I first started working as a chronic illness coach, I assumed most of my clients would be women. But I was wrong — nearly half, sometimes most, of my clients are men.”

Society tends to associate chronic illness with women — which means men with long-term conditions are often forgotten or misunderstood.

Men’s suffering is frequently invisible, even to health professionals, because they’ve learned to hide it.

Many men don’t fit the “expected” image of a chronically ill person, so they fall through the cracks.

As a society, we all need to broaden the conversation around chronic illness. Men get sick too — and they deserve understanding, support, and visibility.

04/11/2025

Men’s Health Awareness Month: The Hidden Story of Men and Chronic Illness

This month, I want to shine a light on something that isn’t talked about nearly enough.

When we think about chronic illness, most of us picture women. It’s true that many visible voices in the chronic illness space are female, and I once assumed the same. When I began my work as a chronic illness health coach, I thought I’d mostly be supporting women. But I was wrong.

Over the past few years, I’ve worked with just as many men — and sometimes almost exclusively men. Their experiences have completely changed the way I see chronic illness and how it’s lived. Because while men face the same pain, fatigue, and uncertainty that illness brings, they also face a whole set of unique challenges shaped by identity, shame, and silence.

They struggle to speak up about what they’re going through. They push through exhaustion because they believe they have to. They suffer quietly, misunderstood and often unseen. And that silence can be devastating, not only for their physical health but for their mental and emotional wellbeing too.

Throughout Men’s Health Awareness Month, I’ll be sharing a series of reflections on the realities facing men with chronic illness — what I’ve learned from supporting them, and what needs to change in how we see and support men’s health.

If you’ve ever loved, cared for, or been a man living with chronic illness, I hope these words help you feel seen, understood, and a little less alone.

31/10/2025

So many of you have been in touch this month in response to my series of Dysautonomia.

I am so sorry to hear that how lots of you are suffering with these difficult symptoms.

Many of you have been asking about how to get help from specialists, so I thought I would do an update post with some more information.

It's quite tricky to find a specialist in the NHS, although there are a few. There are others who are private.

Some of the specialists that my clients have seen are
• Dr Nick Gall at Kings College in London
• Dr Sanjay Gupta at York cardiology
• Professor Julia Newton Newcastle
• Professor Melvyn Lobo
• Dr Arnold Deering

PoTS UK have a 'find a clinic' page on their website with more NHS practitioners https://www.potsuk.org/clinics/.

If you Google ‘Dysautonomia Specialists UK’ you will get a range of practitioners.

It’s important to do you research and identify the specialist who would be right for you. Read their websites and find out about their research interests and specialisms.

Talk to your GP for some advice and take the list of specialists you have found with you to discuss with them.

I am going to be giving a talk about MCAS and PoTS for PoTS UK (as part of my role for Mast Cell Action) tonight, Friday,31st October, so you might want to come to that if you are interested in finding out more about MCAS and PoTS, as there is often an overlap. The booking link is here https://us02web.zoom.us/webinar/register/WN_2E2l6jJZQlG2sW5O8gpDKw #/registration.

I really hope that that is helpful for some of you, and I really wish you all well in your searches to find the right specialists. It can be a case of trial and error to find the right person, so persevere until you get the help you need.

Warm wishes, Deborah

We have compiled a list of clinics staffed by NHS doctors and nurses with an interest in PoTS and who are supportive of PoTS UK and evidence based medicine.

30/10/2025

In the final post to mark Dysautonomia Awareness Month, I’m going to look at Comorbidities – conditions that often co-exist with Dysautonomia.

People who have dysautonomia often have a range of other health conditions.
But did you know that it’s common for dysautonomia to be found alongside 2 other conditions in particular?

Ehlers-Danlos Syndrome (EDS): A connective tissue disorder that can cause joint instability, hypermobility, pain, gut issues, and fragile skin. Many with EDS also experience dysautonomia, probably as a result of how connective tissue impacts blood vessels. There are many hypermobility spectrum disorders, and many people are with dysautonomia experience some form of hypermobility, even if they don’t have EDS.

Mast Cell Activation Syndrome (MCAS): A condition where mast cells release chemicals like histamine inappropriately, in response to triggers that should not be dangerous, like foods or household products. This causes allergic-type reactions that can be very severe and debilitating. People with MCAS often notice dysautonomia symptoms during flare-ups.

This trio, Dysautonomia and EDS and MCAS, is often present in my client population, and I support people with all 3 of these conditions. People often experience one or two of these more severely, with mild symptoms of the other. This balance can ebb and flow over a person’s lifetime, where they experience a flare in one of them in particular during different periods of their life.

Recognising these links is vital for better care, because getting one condition under control often helps ease the symptoms of the others, and improves quality of life overall.

For me personally, my dysautonomia is highly linked to my MCAS. I only really experience symptoms of dysautonomia during an MCAS flare, and often the biggest clue that I am reacting to something is the onset of severe dysautonomia symptoms. Treating MCAS has helped my dysautonomia enormously.

💙 Awareness is the first step towards people with dysautonomia getting the support they need, getting accurate diagnosis and treatment, and funding for more research into this condition.

In the UK, you can get support for dysautonomia, MCAS, EDS and Hypermobility from the following charities

POTS UK https://www.potsuk.org/

The Brain Charity https://www.thebraincharity.org.uk/

Mast Cell Action https://www.mastcellaction.org/

The Ehlers Danlos Support UK https://www.ehlers-danlos.org/

The Hypermobility Syndromes Association https://www.hypermobility.org/

28/10/2025

For post 3 in the series to mark Dysautonomia Awareness Month, I’m going to look at the symptoms of dysautonomia.

Because the autonomic nerves control may different body functions, dysautonomia symptoms can affect nearly every system in the body, and can cause all or some of the following:

· Racing or pounding heartbeat

· Dizziness, light-headedness, fainting, shakiness

· Visual disturbance and blurred vision

· Heat intolerance & temperature regulation issues

· Digestive difficulties like bowel paralysis or extreme diarrhoea

· Debilitating fatigue

· Headache

· Chest pain

· Urinary and bladder issues

· Cold or blue hands and feet

· Disturbed sleep

· Brain fog

As you can see, living with Dysautonomia is not much fun! These symptoms can come on all at once, or people may experience a variety of them at different times.

In the UK, many people wait years for a diagnosis, partly because symptoms mimic other conditions, and partly because awareness among healthcare providers is still limited. Patients are often told their symptoms are “anxiety” before the root cause is properly investigated.

If you suspect dysautonomia, specialist testing (like a tilt table test) may help confirm the diagnosis. Advocacy for yourself is key, and requesting a referral to the appropriate specialist. Having the support of family members or friends to help with this can be crucial, but family members often don’t understand and people can become isolated and alone. It’s a very difficult situation to be experiencing dysautonomia and not getting the support you need.

In my next post, I will share some of the organisations that can help.