Invisible Illness

Before I knew about CFS/ME I was certainly ignorant to the concept of an invisible illness. I was often guilty of judging someone based on their physical ability, for example if I saw someone park in a disabled space who looked perfectly able, I would be confused and sometimes question their right to park there. Unless I was having a particularly bad day where I struggle to move quickly, it’s unlikely you would ever look at me and think I was ill.

That’s where the idea of an invisible illness begins for me, physically I look able and healthy, but internally I’m battling a number of symptoms. That mainly addresses what the term means to general people, but for the sufferer I believe it relates to all the symptoms that can slowly build up over time without you noticing. When I started suffering with CFS/ME I dismissed so many of my symptoms as other issues that could be fixed, I thought the tiredness was just a side effect of IBS or the flu like symptoms were just hayfever. I suppose a big part of this was denial as I didn’t want to accept that this was a bigger long term issue.

Now I have been ill for over a year I can notice my symptoms flaring up without even questioning them. Most nights I reach a point where I am so exhausted but I’m struggling to sleep, I will then get so restless and will struggle to find a comfortable position. Lucky for my boyfriend, I know. At first I thought this was just a habit but now I know that it’s a sign I haven’t rested enough during the day. The idea of having an invisible illness doesn’t just apply to the external or the observers, it lies with the sufferer as well. It is easy to forget that someone is ill when you can’t physically see it, there’s no sign that they are suffering. Sometimes I wish we were like sims and the diamond above my head could turn orange so people knew I wasn’t well that day, that way I wouldn’t have to constantly explain myself.

Realistically, I have never met someone who hasn’t been understanding when I explain I have CFS/ME. But of course this doesn’t prevent me from being anxious at the thought of having to explain to a complete stranger why I am sat in the priority seat and unable to stand for long periods of time. It is tiring having to constantly remind people I am ill, no one that knows me ever questions me on purpose, it is usually a passing comment or they’re worried something else is wrong. It may sound dramatic but sometimes it feels like all I am is my illness, especially when it takes all my energy just to get up and go to the bathroom. On the other hand, there are days when I can put on a smiley front and let myself feel as if everything is normal. Those days are the ones that keep me going with this illness, the reminder that this illness is a cycle and I will have days where I am better, even if they don’t last forever.

Nearly every time I have told someone I have CFS/ME they tell me they never would have known, now this is either a compliment to all my acting training or I really do appear okay a lot of the time. Hearing compliments like that is honestly so helpful when I’m feeling overwhelmed by my illness, it’s a reminder that there are people out there that have no idea I am chronically ill, to them I am exactly who I was before I fell ill.

This post turned out to be a lot longer than I planned, I had no idea I had this much to say on the topic. I hope it helped you see things from my side of an invisible illness, see you next time pals x

Author: Ells Jayne

A 21 year old suffering from CFS/ME whilst studying at university in Brighton. Follow my story as I write about living with an invisible illness whilst studying and trying to launch a career.

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