This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. There is so much more to say about this. But I am being cautious.
Myalgic Encephalomyelitis. Chronic Fatigue Syndrome. Systemic Exertion Intolerance Disease. All these labels are used by the medical world to refer to the same condition; the condition that has plagued my own life for almost a whole decade. I prefer Myalgic Encephalomyelitis, as do the majority of my peers. For this post I’m using ME/CFS.
Too often we see fractures within the ME/CFS Community that are causing incredible damage to the very people who are on our ‘team’. This post was inspired by my increased exposure to those divisions within the Community. Frustrations run high within this Community and we surely have been dealt a dreadful hand. Not only can our symptoms be incomparably disabling, but we are isolated and forgetten about the majority of society and the medical world.
But it feels important to declare that:
An individual’s diagnosis is not their fault.
If you disagree with the label Chronic Fatigue Syndrome being lumped with the label Myalgic Encephalomyelitis, your anger and frustration should not be placed at the door of any individual sufferer.
If you question the authenticity of another’s suffering because they have shared a story of recovery from an illness you believe cannot be cured, your despair at that individual having been given a diagnosis you do not feel to be just, is again not the fault of that individual.
No-one with this condition has an easy ride. Not one person. Those with ‘mild M.E.’ lose 50% of their function. (So yes Mild seems a ridiculous indicator but there we have it.) Each and every single case is completely different and none of them are pleasant.
If you find yourself questioning another’s diagnosis just remember that they were given it by a medical professional. It is the medical world that needs challenging, not that individual sufferer. To be completely neglected by medical professionals and then have strangers on the internet declaring that you can’t possibly have the health condition you claim to have is just so damaging.
I wholeheartedly agree that it is problematic to have such a variety of severities under the same label, but again, no fault lies at the sufferer’s door. I understand and am aware of how damaging and misleading it can be, but again, it is not the fault of the sufferers that this is the way things are.
I have friends who are tube fed. Friends reliant on catheters. I have friends who have made astronomical improvement, within their own individual and unique journey. Friends who sat up again for the first time in years. Friends who can now put one foot in front of the other after being told they never would. I have friends who now live closer to true freedom. Friends who bravely dare to whisper that word, the R word, the word Recovered, that can immediately cast them as outcasts within a community of people with an illness with no known cure. I have friends who have endured Graded Exercise Therapy, which has done devastating and permanent damage to their bodies. Friends who have seen more decline than improvement. And all of these individuals have been given the same diagnosis.
If someone with the same diagnosis as you can perform tasks that you cannot even dream of, it is not the fault of that other individual that you have been given the same diagnosis. I heard recently (April this year) of a group being set up to ‘discuss’ whether a popular social media ‘influencer’ “could really have M.E” because they were able to perform certain tasks. We will come to Exercise and M.E. another day by the way, but for now it feels imperative to post a reminder that, although damaging and surely frustrating to see such disparity with regards to severity, an individual’s diagnosis is not their fault.
We are ostracising vulnerable people who find themselves in a ‘No Mans Land’ of not being ‘sick enough’ in the eyes of some, and not being ‘well enough’ in the eyes of others. We are disregarding the years of all-consuming suffering that they have endured. So you don’t believe they can really have been as sick as they say they were because they can now do x, y, and z? Chronic illness is painfully lonely already, without the ME/CFS Community turning on those who’ve made incredible progress.
With that being said, we do each have a level of responsibility. Circumstances and symptoms vary greatly. We are in no place, therefore, to assume that all others with the same diagnosis as us are experiencing things as we are. And so we cannot make blanket statements about things that may have eleviated certain symptoms or given us some respite and relief. We must not get caught up in the cycle of assuming that anyone suffering to a certain degree must not be trying hard enough to get better. We must not heavily imply that it is mere “hope and hard work” that leads to improvement. I have been exposed to a section of social media within the ME/CFS Community that seems to be thriving on that very basis. I have some pretty strong words to say in response to that but now is not the time.
Each of us can only ever view things from within our own set of circumstances and environments. This will affect our perspective greatly. We must be mindful that we’re not assuming everyone can make the progress we’ve made if they do exactly as we do. I’ve tried different diets. I’ve forked out for supplements. Some exacerbated my symptoms. Some improved them. But eventually my circumstances led to me being unable to keep taking the supplements. That should never be taken to mean I didn’t want to better my health enough. I was recently told to “remove all stress from your life if you want to get better” and see the same level of improvement that this individual had seen. That in itself was quite a stressful experience!
It’s tricky. It’s messy. It’s far from ideal. But it’s the hand we’ve been dealt. For now.
So I’ll say it again for anyone still unsure; an individual’s diagnosis is not their fault. And don’t you dare even imply that their symptoms remain because they’re not trying hard enough, or that they can’t possibly have been as ill as they declare because of the progress they’ve experienced.