This week is invisible disabilities week (17th -23rd October), so you guessed it – today I am talking about living with invisible disabilities.
Rather than talk about what constitutes as an invisible illness or disability, today I want to share with you a previous experience I had during my time living with invisible disabilities. This example is from many years ago when I was able to work and socialise – this is no longer the case as my conditions have developed since then, and I now have additional diagnoses and symptoms. Please note the disabilities I am referring to are Fibromyalgia, ME and Tourette Syndrome.
I check the clock again, oh crap it is 30 minutes later to the last time I checked – I must have fallen back to sleep – I am exhausted, my body feels like I am lugging another body around as well as my own, maybe another two bodies even. I am so late.
I get to the bus stop and can see there are no available seats in the bus shelter. They have all been taken. My body is struggling today already, I really could do with sitting down, but the seats are taken with people messing around, or on their mobile phones oblivious to the pain I am in. I hover around until I have no option, but to lean against a wall and silently deal with the pain.
Great, there are no seats on the bus apart from the side seats, the ones reserved for the elderly, those with mobility aids or with pushchairs. I hate sitting in them a) because the seats are too hard for my aches and pains and b) I can sense people judge. Today I sit there, I don’t have the energy to stand. I survive about 3 stops and then typical here comes a pushchair – a double buggy at that. I can sense people’s eyes on me and feel obligated to move. I find myself in the aisle of the bus along with other non-seat finders, a few who are noticeably older than me. People offer them seats and they accept. I am the only one left standing, no-body cares.
I’ve finally made it into work and to my desk. I feel relieved to be able to sit down without barriers. Today I have a lot of work to do and a lot of chattering workmates who don’t seem to know what volume control is. The sound is penetrating my ears making it difficult to concentrate, then a young woman in my team decides to spray some deodorant telling everyone she wants to smell nice. The smell invades my nose, eyes and throat, so I cannot breathe properly. When I mention it to my colleague it is brushed off under the carpet like I am exaggerating. The noise of the others is my team is getting louder, I ask my manager if I can move seats to a quieter spot and he looks at me like I am an alien from another planet. He declines instead telling me I need to learn to adapt to the noise levels around like I am making a fuss about nothing.
The day is extremely stressful with deadlines at every corner, I can feel the familiar build up in my chest telling me I need to tic. I am able to control it, but it puts enormous pressure on my body. I confide in my colleague who proceeds to tell me I don’t look like someone with Tourette’s and therefore why do I need to tic. The sad thing is I think she thinks she is giving me a compliment.
My fatigue and exhaustion are in full flow, but I arranged to meet my friend after work for some food. My whole being wants to cancel, but I have done this several times this month already because of my symptoms. She never buys it, she thinks I am lying to get out of seeing her. We meet up at her choice of restaurant – somewhere I have never been before – and notice there isn’t anything on the menu I can eat. She knows this I have told her before and I say it again now. She looks at me like I am lying – ‘what nothing at all? ‘Why don’t you try that or that?’ I tell her I can’t because of my stomach issues, she tells me she knew of somebody else who ‘claimed’ to be like me and actually they could eat these things, they had just convinced themselves they couldn’t. Needless to say, I left the restaurant extremely hungry.
My friend walks with me back to the bus stop, it is incredibly cold out and my circulation is struggling despite the layers and layers of clothing. I mention the pain I am in, and she tells me she has the same problem. What Raynaud’s I ask? No, she replies I just get a bit chilly. She also feels the need to mention I was way too quiet. I tell her my ME makes it hard to function let alone talk especially after being at work. She tells me gets tired, how is my ‘tiredness’ any different to hers.
Finally, I am back on the bus on the way home. I cannot wait to get home and to be able to eat and wrap up and call it a day. My head is banging, my stomach is griping, my pain is at an all time high partly from the cold, partly from the Fibro. My exhaustion is making me dizzy and nauseous, so I sit on the front seat. Other people get on, some are elderly and obviously feel I have stolen their space. I am asked to move, those seats are for the elderly or disabled I am told. I tell them I am disabled, but still move. I am told I am wrong because I don’t look disabled or sick, and that I should think myself lucky I look and am as healthy as I am. I feel embarrassed and fix my gaze outside the window, there’s no point arguing they don’t see it therefore they’re never going to believe it.
I collapse into bed, weak and defeated by the day. The saddest thing is I know it will only all start again tomorrow. The unconscious bias against invisible disability/illnesses. The problem being when people cannot see what is wrong with you or the symptoms you are harbouring, they tend to believe your symptoms are not as bad as you say they are, that you are exaggerating and is some cases may believe you are lying. They may think you are convincing yourself you are worse than you are, or in some scenarios believe it is attention seeking behaviour – all because they can’t see it and if they can’t see it, it can’t be real right?….
I hope this post helps in sharing the reality of invisible conditions, and the constant battle it is. What are your experiences? Are they similar to the ones I have described?
Sarah xx
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