So I haven’t done a list in a little while and I thought about things I’m sure people don’t understand or misunderstand about me all the time. As always this isn’t to point the finger at anyone in my life or even yours but to have a moment of how powerful the way we talk about people is.
- I don’t want to do something or go to an event. The correction is I cannot. I might want to be there more than you can imagine but due to my illness, noise sensitivity or just I can’t make the travel possible I cannot go. One word in that sentence changes the emphasis to not being a choice but to the actuality of not being able to.
- Using aides means I have more energy to go around. When I first got my wheelchair because I was out of the house people who knew me thought it was ‘progress’ to my recovery. When in fact I had been told for my immunity and sanity to get out of the house once a week. They saw me dressed and out somewhere on the one day I used a lot of energy. What they didn’t see was the mess once I was home. Aides can be very helpful and help you do things that would be impossible without them, but most of the time, they aren’t optional to make energy more resourceful.
- If I’m in a wheelchair, they can’t see what is ‘wrong’ with me. Now I’m not going to blame anyone who sees me for being curious, however, we have to as a society delete the narrow definition of a disability. Just because I can move all my limbs and get out of the wheelchair to sit at a table does not mean that there isn’t something wrong with me. I sometimes am grateful that I have the wheelchair as a visual cue otherwise I look ‘fine’ so people wouldn’t be helpful or even know that I might be struggling to stay upright.
- It is helpful to say, “You don’t even look ill! You have good colour and look amazing!” Whilst the sentiment of that compliment is lovely it can leave people like me, with imposter syndrome. If you have an invisible illness, it can feel like a slap in the face because for you to look ‘fine’ you’ve spent half an hour cancelling out the general deathly pallor and deep dark circles. It invalidates your struggle and your illness.
- We need something to do seeing as most of us can’t work or study. The number of hobby suggestions I have had over the years whilst well meaning could make me scream. If I had the energy my main priority would be my future my independence and my general happiness. By all means, suggest something low energy if you want to but don’t suggest something unobtainable, please.
- I have spare time and life is easy. Some people may think that being ill full time is a little bit like being on holiday all the time. Being ill is a full-time job, I give serious respect to anyone who can do a job and be ill. If people knew about the monitoring, the form filling, the endless appointments and the plain battle to get everything running slightly smoothly it is tough and draining. We don’t have an alternative reality that means life is one long Netflix and snacks binge.
- We aren’t aware of our limitations or what is lacking in our lives. People, I think to try to level with you and talk about when you are going back into education or how bad your social life is these days. We know painfully where we need to grow and improve our lives, we are working as hard as we can on this.
- We know all the latest articles about our condition. I quite enjoy it when people send me the articles but I don’t obsessively Google my condition to see what the latest research is saying about why I got ill and if there’s a cure. It is too unstable to pin hope on one or two studies that look ‘promising’.
- That I know the people you know with my condition M.E/CFS. Sounds silly but a lot of people assume you can be in contact with fellow warriors even if they don’t live in the same county as you.
- We don’t want to hear your good news. Please don’t hide your happiness from us, we may be sad but we can be happy for you. Supporting you is important and we can deal with the fact your life is advancing even if ours isn’t.
Let me know if you have any other misconceptions you deal with. Are mine just due to my personality or are they the same for all of us? Let me know, I’d love to hear from you.