Is ME CFS Invisible?

Whether ME CFS is invisible or not is a question I am continually conflicted in answering. For some reason I can’t seem to make up my mind on this. Is ME CFS invisible? In some ways, yes, it’s completely invisible. But at the same time, my mind is saying, no, it’s as visible as anything else. Let me explain… 

ME CFS: The Invisible Condition 

Ask someone to show you what disability looks like, and you can pretty much guarantee they will mention the use of a mobility aid, most likely the use of a wheelchair. This isn’t the right answer of course. We all know full well that being disabled doesn’t have a certain “look” or even a certain way to “behave”.

However, ask someone with ME CFS whether they consider themselves disabled and most likely, the answer will be yes. The hallmark of life with ME CFS, post-exertional malaise, the exacerbation of symptoms following any sort of exertion, disables anyone with it. People with ME CFS, no matter how much they’ve come to terms with life with chronic illness, are not generally able to do a full day of activity like a healthy person would. People with ME CFS, in attempting to learn to pace, have to plan out their activities to such minute detail, the idea of spontaneity goes out the window. The very nature of the word disability meaning a limited ability to complete physical or mental tasks makes life with ME CFS pretty synonymous with being disabled. 

However, is the disability that comes with life with ME CFS visible to others? Can others see the effects that ME CFS have on one’s life? Quite simply, no they can’t. Unless you ask those closest to someone with ME CFS, I’m pretty certain it wouldn’t be obvious that that person has a life-changing condition. 

People with ME CFS range from those at the mildest end of the scale, able to work full-time, albeit with weekends needed to rest, to those in the most severe category: bed-bound and even tube-fed. Does Joe Bloggs on the street see these people? Most likely, no they don’t. Do they see the days, weeks, months, spent recovering from an exertion that has pushed them beyond their limits? Do they see the cognitive difficulties stopping a person from fulfilling their careers? Do they see the hypersensitivity to light, sound, sensory input? No, they most likely don’t see any of these things. The case for proving ME CFS being an invisible condition is pretty strong with all those things in mind. 

However, what about… 

ME CFS: The Visible Disease?

While I’ve spent most of this blog post saying that I think ME CFS is invisible, like I said at the beginning, I can’t yet decide whether actually, ME CFS is a visible condition after all.  

Many people with ME CFS are like me, using mobility aids to help them gain, and retain, an element of independence to their lives. Whether that be through using crutches, a rollator, a manual or electric wheelchair, people with ME CFS will often be found with a support to help them either in the house, or out of it. 

As I’ve written about in previous blog posts, my powerchair (electric wheelchair) is my saviour. Far from being reliant on it, my wheelchair gives me the life I want and that which works for my family. My wheelchair allows me to get out of the house with my daughter, taking her to the swings, around the shops, to see friends. While I don’t use it every day, it is there for when I want to travel further than about 20 metres, that doesn’t involve driving my car to the very edge of my destination. 

This is one of the things that makes ME CFS completely visible. How can you miss someone’s mobility aid? While not everyone is comfortable talking about their mobility aid and their reasons for using it, I don’t mind in the slightest. I don’t mind people seeing my wheels. 

For those who are close to those with ME CFS, the condition is completely visible. Your loved ones are going to see the crashes, see the effects of overdoing it one day. They’re going to witness your cognitive difficulties, the difficulties with orthostatic intolerance (inability to stay upright for long), they’re going to see and witness that hypersensitivity to senses. No matter how well you manage, they’re going to notice the difference in energy levels between your pre-ME CFS and current life. 

There’s no denying it, ME CFS is a completely life-changing condition. But whether it’s visible or invisible is up to a person’s own opinion.

What are your views on the visible or invisible nature of ME CFS? Which category do you view the condition as? 

Soph x 

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One thought on “Is ME CFS Invisible?”

  1. A thought-provoking question. I think it’s both, and I do agree on it being personal opinion. As you say, an mobility aid like your wheelchair makes it visible. To those around you, your closest loved ones, it’s likely somewhat visible, especially if they see you at your worst. For the most part though I think we become skilled at putting on a brave face, pushing through whenever we’re able to, then hiding away when we can’t and not showing the world that part. I think I’ve come to the point where I don’t even want to show there’s something wrong because I don’t want the questions or the scepticism, which is pretty awful really. Even if it’s ‘visible’, like I look exhausted or I’m using a mobility aid, I don’t think it’ll ever be fully visible; nobody could ever seen how bone-deep exhausted I am, nobody could see how I really feel or the level of pain I’m in or the difficulty with which I struggle through the days with fatigue. Fantastic exploration of this invisible condition aspect of ME/CFS!

    Caz xx

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