Invisible Illness Awareness Week

Today marks the beginning of Invisible Illness Awareness Week.

I have multiple invisible illnesses, and unless you know me and don’t misconstrue why I’m acting the way I am. Heck even my parents misconstrue and they should know me. Or unless I’m wearing a brace or using a mobility aid most people would be none the wiser.

See you don’t have to look obviously ill to be ill. A multitude of sins can be hidden by make up and result in a “oh you look well.” Well I’m glad I “look” well. But underneath I’m not. Just because I don’t where a massive badge saying “I’m ill” every day, doesn’t mean I’m not. Just because I don’t talk about it all the time and say “I’m fine” or “I’m good, how about you.” Doesn’t mean I am in fact good.

It’s the concept of invisibility that people really don’t seem to understand.

You look fine so you must be fine. When everyone else gets sick they get sympathy but no one gives a damn as to how you must be feeling and the symptoms that you push yourself through every day. Sometimes just to to basic tasks. Other times to engage in physio, work, study or even have fun.

They see you for what you have achieved. “Oh you can’t be feeling that ill if you completed a masters, graduated from your undergraduate top of your class, worked at points throughout both and have done numerous extracurriculars.”

They don’t see that you did most of this laying in bed because sitting upright for prolonged periods is such a challenge. And that even then you pushed yourself so much because your mental health struggles to understand the concept of rest is good. And because at the end of the day you want a life. Your going to live with these conditions every day for the rest of that life. What are you supposed to do? Lay around and watch TV all day every day? At which point you’d be called lazy, work shy and many other things one does not want to be called.

The funny part is if you look closely my conditions aren’t invisible. It’s the wincing in pain, leaning against a wall, walking slowly. Losing balance, sometimes struggling to walk in a straight line. Walking into things. Dropping things. Missing my mouth. My joints hyper-extending. Slow processing speeds that can often be misconstrued as me just not listening or being rude.

Most of the time our illnesses aren’t actually all that invisible. It’s more that people aren’t actually as observant as you’d think and if they are observant they’re too quick to jump to explanations that really aren’t the case. Drunk, high, lazy, putting it on for attention, rude.

Everyone without an invisible illnesses needs to think before making assumptions about someones behaviour. And if someone asks for a seat on public transport or an accommodation to a day out or at school or work realise that they wouldn’t be asking unless they needed it, and if in a position to help, help.

I saw you do x so you’re well enough to work

I feel this is a common misconception that muggles have, as if work is a low energy task that we an just do if we’re atall seen out of the house. And it hurts us chronic illness wizards beause we then very much fear being sruitinised for every little move and push ourselves to go into work even though we very much should not be at work. We put on our fake smile and go with it beause anything is better than being stuck in a house.

But it is very much a misconception, regardless of the job you have. Yes I may be able to pop to the shop up the top of my road to grab some essentials but that doesn’t necessarily mean my “sick leave” is me faking ill beause I’m lazy and I cannot be bothered.

See the thing is, having ME is not that linear. I wish it was.

The problem is working 8 hours a day even if it’s largely desk based is a high energy task and the nature of work being 8 hours with one break makes it even more high energy. For anyone trying to maintain they’re focus and accuracy especially if doing repetitive tasks is difficult. For someone with ME this is even more difficult of a task to do and makes us feel really poorly.

Compare that to just popping to the shops, yeah it takes energy but I can rest after what is a 10 minute round trip. Not all activity is equal and just because we’re off sick because of our disability it doesn’t mean that we are off sick from adult responsibilities. They’ll always be there.

On the more extreme end of this you may see someone with ME or any other invisible illness going out to the cinema or going to the theatre. Theatre trips are booked in advance so yes I will be going. And that one day of activity or two hours if you live in a convenient location is nothing compared to working 8 hours a day 5 days a week. You have an opportunity to rest during the day for those two hours. The same goes if you see someone out for a meal with they’re family or friends.

Stop being quick to judge. And I’m saying this as someone who also used to be quick to judge because I sacrificed all else for my degree so when other chronically ill people were struggling and I saw that in social media I just felt they weren’t prioritising their degree enough and putting too many spoons into having fun.

But here’s the thing. Just because we’re disabled doesn’t mean we’re less worthy of a work life balance. And the view that if you are capable of doing anything else then you are capable of working can be very harmful to people with invisible illnesses both physically and mentally.

Do you know why? Because it leads us to push ourselves to dangerous limits in order to avoid such scrutiny. And that is not okay. We shouldn’t feel the need to do that.

Invisible illnesses come in all shapes, sizes and abilities. They often fluctuate over time. We all need to learn to stop being so quick to judge and just respect that we all have our own limits.