May is an important month for the complex chronic illness community. It's Ehlers-Danlos Syndrome Awareness Month, and May 12 is International ME/CFS and Fibromyalgia Awareness Day.
For people living with these conditions, many of us at Visible included, these awareness moments can feel like a strange mix of validation, hope, and frustration.
To mark them this year, we asked our members to share what life with these conditions actually feels like, what they wish more people understood, and what needs to change. Their answers, in their own words, are below.
Exhaustion, pain, unpredictability
When asked what daily life with these conditions actually feels like, themes of exhaustion, pain, and unpredictability came up repeatedly.
"Living with fibromyalgia is unpredictable. You can take every precaution and the pain still comes. On bad days, my body feels like it's on fire, like someone's taking a hammer to my bones." — Lizzie, living with Fibromyalgia
"Day to day it feels like I'm drowning. Like I'm walking through treacle all the time. I mourn who I used to be before getting sick and I miss her." — Mia, living with ME/CFS
"How I feel doesn't make sense to me either. Some days I can go on long hikes; some days I need mobility aids for a short walk. No matter how much I plan, I can't control it. It's not a problem of will or dedication." — Riley, living with hEDS
Misunderstood and minimized
Many people described the frustration of having complex and fluctuating symptoms minimised or misunderstood.
"Much of the focus on EDS, whether in articles or innocent assumptions, is that it's 'just hypermobility'. But it's actually a body-wide condition that affects the autonomic and gastric systems, dental health, skin, and more. There are also lots of different types of EDS with their own symptoms and outcomes, we're not all the same." — Elle, living with EDS and ME/CFS
“People assume that if you managed to leave the house, go to work, or look okay for an hour, you must be fine. They don’t see the recovery afterwards, or how much planning and energy something small can take.” — Matt, living with ME/CFS
Across these responses is a shared experience of not being fully understood. These aren’t simply gaps in public understanding, they reflect deeper assumptions that place responsibility back on the person who’s unwell: try harder, push through, plan better.
That’s why awareness days matter. They create space to challenge misinformation and make the realities of living with these conditions more visible.
The complicated reality of awareness days
"I'm touched every year by how much precious energy people with ME use to raise awareness. At the same time it's hard not to feel disheartened that we're still fighting to be heard year after year." — Anonymous, living with ME/CFS
Across members' responses, there was gratitude for the solidarity and visibility that awareness days can bring, but also frustration at how misunderstood and unsupported complex chronic illnesses still are, and how much still needs to change.
The change people want to see
Beyond awareness itself, many people spoke about the need for earlier diagnosis, better support, and more investment in research.
1. Earlier and more accessible diagnosis
“I spent years being told my symptoms were anxiety, stress, or ‘just part of getting older’. By the time I was finally diagnosed, I was very worn down by how hard I’d had to fight to be taken seriously.” — John, living with EDS
John’s experience isn’t unusual. For hypermobile EDS, the most common subtype of Ehlers-Danlos syndrome, there is currently no definitive test, and delays to diagnosis are common. ME/CFS and fibromyalgia are similarly challenging to diagnose: there is no single test for either, and symptoms often overlap with other illnesses. Many people move through long referral pathways and repeated investigations before they get an answer. Some people never get a formal diagnosis.
2. Better support and care
“A tailored diagnosis and care roadmap for healthcare providers to follow would be a great start.” — Elle, living with EDS and ME/CFS
For a lot of people, the diagnosis isn't the end of the search. It's the start of a different one: looking for care that actually fits.
What members often described instead was being handed leaflets, generic advice, and links to websites before being sent home to manage on their own. People understood that there is not yet a clear treatment pathway for these conditions, but many still wanted guidance and symptom management that takes these illnesses seriously and reflects how unpredictable they can be.
3. More research
“Real change will only come when we all have better healthcare. I’d like to see much more investment in biomedical research, and easier ways to get diagnosed and treated.” — Anonymous, living with ME/CFS.
Many people wanted to see greater investment in research and a deeper understanding of conditions. They spoke about the frustration of living with illnesses that remain relatively under-researched despite the severity and impact of their symptoms.
There were calls for larger and longer-term studies, more investment in understanding the biological mechanisms involved, and research that reflects the full spectrum of illness severity, including people who are too unwell to participate in traditional clinic-based studies.
From awareness to action
Awareness days and months create visibility and connection for people living with complex chronic illness. But the people we spoke to were also clear about what needs to change: earlier diagnosis, better support, and more research for complex chronic illnesses.
Thank you to everyone who shared their experiences with us. Your experiences are what drives the work we do at Visible year-round.
We know that for everyone living with these conditions, progress cannot come soon enough.
