The Silent Suffering
M.E. is often referred to as an “invisible illness,” it’s a description I am not personally keen on, but it’s a term that reflects how its symptoms are not always visible to the outside world. But just because the pain, neuro-exhaustion, and cognitive difficulties can’t be seen, doesn’t mean they don’t exist. The ‘invisibility’ of this condition has led to a profound lack of understanding and empathy from those who don’t experience it first-hand. For many of us, this has resulted in years, often decades, of being dismissed by healthcare providers, misunderstood by friends and family, and overlooked by society at large.
When I campaign for change for the M.E. community, I’m fighting for recognition of this silent suffering. I’m advocating for a world where people understand that just because someone looks “fine” on the outside doesn’t mean they’re not enduring a daily struggle on the inside. This understanding is the first baby step towards adequate care, more research, and ultimately, treatment options.
The Need for Research and Treatment
One of the most frustrating aspects of living with M.E. is the lack of effective treatments. Despite affecting millions of people worldwide, M.E. remains under-researched and underfunded. This means that many of us are left to manage our symptoms on our own, with very little guidance or support from the medical community.
Campaigning for M.E. is, therefore, a matter of urgency. It’s about pushing for equitable and appropriate care from our healthcare organisations. It’s about making sure that the next generation of people diagnosed with M.E. doesn’t have to endure the same uncertainty and neglect that so many of us have faced for so long.
Fighting for Visibility and Validation
Living with M.E. can feel incredibly isolating. The nature of the disease often forces us to withdraw from social activities, work, and even our own families. On top of this, the lack of awareness about M.E. means that many people don’t even believe the illness is real, leading to a deep sense of invalidation.
When I campaign for M.E., I’m not just fighting for myself—I’m fighting for every person who has been told that their illness is “all in their head,” for everyone who has lost friends because they couldn’t keep up with social commitments, and for everyone who has had to give up their dreams because of this disease. Through my campaigning, I hope to create a world where people with M.E. are seen, heard, believed and cared for.
Purpose
The M.E. community is one of resilience, strength, and solidarity, and by campaigning, I hope I contribute to that spirit.
Campaigning gives me a sense of purpose and hope. It allows me to channel my frustration and anger into something positive—something that might make a difference for others living with M.E. It’s about standing up and saying, “We’re here, we’re struggling, and we deserve better.” And it’s about ensuring that one day, we will live in a world where M.E. is not just recognised, but understood, treated, and ultimately, cured.
Why It Matters
Campaigning for people living with M.E. is deeply personal to me because it’s about far more than just raising awareness—it’s about fighting for recognition, research, and respect. It’s about ensuring that the next generation of people to live with M.E. don’t have to face the same challenges alone. And most of all, it’s about creating a world where people with M.E. are seen, heard, believed and cared for. Until that day comes, I’ll keep fighting—for myself, for the millions of others like me, and for the future we all deserve.
Sally