Before I became ill in 2007, I skirted around the issue of disability. I knew that some people were disabled and my sister was amongst them. I didn’t really understand it fully until it happened to me and then I had to grasp the fact I had what is known in disability / chronic illness circles as an invisible disability. I like many others had thought that if you were sick you “looked” sick.
What is an invisible disability?
An invisible disability is one that is not immediately apparent when looking at the person in front of you. You can’t tell by looking at me that I am disabled. Most of the time I can look quite healthy to those who don’t know me. By looking at me you can’t tell that every step I take is a struggle, that my blood pressure is dropping and that my heart is racing. You may notice there is something wrong with me, if I slowly slide down towards the floor but other than my wheelchair there is no outward clue that I have severe autonomic dysfunction or Ehlers Danlos Syndrome.You may notice my disability if ptosis strikes but on the whole my disability is invisible to you but that doesn’t mean it isn’t real.
Its not just me that has an invisible disability there are millions of us all over the world. It is estimated in the UK that one in seven people are disabled or could be classed as disabled under the Equalities Act 2010. To qualify as disabled, for want of a better phrase you have to have a condition that impacts your everyday life and have a condition that will last more than 12 months. With some conditions you are automatically protected under the Equalities Act such as Cancer, MS or AIDS. With so many of us walking around (or not in my case, more like wheeled around!) you would think that disability would be more visible to those around us and more accepted. That we would be more represented in the media. By this not being the case it makes us invisible and our conditions invisible too.
You can’t identify a person that suffers from epilepsy or diabetes or asthma or rheumatoid arthritis or lupus or mental illness just by looking at them. Not even the medical profession can do that, why do you think they have to carry out so many tests to diagnose someone? If our health conditions could be diagnosed just by looking at us, I wouldn’t have had four years in the wilderness not knowing what the hell was wrong with me!
Other than my trusty chariot pictured below or the fact I walk with a stick there are no clues for the outside world to pick up on. Even with my mobility aides my disability, my level of “sickness” is challenged by the outside world.
It seems to be no longer enough to use a wheelchair to be classed as disabled. People seem to be doubtful of a disability unless they can see it. Im sorry my disability does not present itself in a way that’s “acceptable” to the general public. When I have been out in public, with my ptosis is in full swing, I get stares or people making fun of me. Even with one side of my face looking like I have had a stroke people do not believe that I am disabled. I no longer know if its the fact that my disability is invisible or if its the case that my disability is simply unacceptable and is chosen by others to be ignored.
Having an invisible disability can be a bit of a nightmare, especially now in the UK where people with disabilities are being hounded by the right wing press and being accused of being benefit scroungers. Sometimes it can feel like the whole world is against you when you have an invisible or visible disability.The disabled in this country seem to be divided into the “worthy disabled” and the “unworthy benefit scrounging scum disabled”. Usually those of us with an invisible disability fall into the unworthy category, unless its a few special conditions, which means by the Daily Mail disability test you go straight into the “worthy disabled” section. I am not saying that anyone is anymore disabled than anyone else, being disabled / chronically sick sucks no matter what the cause. I am simply trying to explain what its like living with an invisible disability in the UK under the coalition government.
The problem with having an invisible disability
The examples below are what have happened to both my husband and I.
This happens on a regular basis to us. My husband drives our car into a disabled parking bay and I have placed our blue badge in the windscreen so that parking attendant can see we are legitimately allowed to park in this spot. Que the angry member of the public,( having witnessed us park up and not “look” disabled) starts accusing us of using a disabled parking space when we arent entitled to. Its happened on numerous occasions now, we deal with it by saying nothing, when it first happened we tried to engage with them and explain I was a wheelchair user but it soon became clear that we were wasting our time and energy. Usually my husband assembling my wheelchair at the back of the car is enough to get them to shut up. I would like to point out we have never received any kind of apology after they have verbally abused us. The accusers tend to sculk off rather quietly, I secretly hope that they never do it again to anyone else who does not “look disabled”.
Last year in the height of summer I accompanied my husband when he went to take our dogs out for a walk on the local common. As this is just too physically demanding for me I sat in the car enjoying the view on a perfect summers day. My window was wound down and as I sat there minding my own business two walkers went past. At the top of their voices I heard one of them say to the other “What a lazy bitch sat in her car on a day like this” to which the other replied “what’s the f***ing point of doing that?”. These were not young people who made these comments but a couple in their late 60’s. I was so stunned by what I was so obviously supposed to hear I couldn’t come up with a reply. My cheeks burned and tears pricked my eyes. These people had no idea why I wasn’t walking and were quite happy to sit in judgement of me. I would give anything to be able to walk with my dogs on the common. This has been one of the hardest things to accept, that I have lost the ability to walk my dogs, as I used to walk them for miles everyday before I got sick. Their comments really hurt me.
I was in hospital a few years ago and had my walking frame beside my bed to enable me to use the toilet and shower which were just a few metres away. When you are admitted to a ward you are supposed to have a load of paperwork filled out containing information about you such as whether you are fully mobile, need assistance, next of kin etc. On this occasion no paperwork had been completed and to be honest I was too sick to care at the time. The next morning when one of the nurses I knew came on the ward she had a look at my paperwork, only to find that the nurse who had completed it had stated I was fully mobile and needed no assistance with washing or dressing. Blatantly not true! The night before I’d had to hide my walking frame as the nurse kept trying to move it away from me. Despite me telling her repeatedly it was mine. When I asked about the mistakes on the paperwork I was told “I looked too well to need help” and “I looked so young”. I didnt realise that to qualify as disabled I had to look a certain way! It is a bit disappointing when you are in a hospital your disability is completely invisible to them also.
This happened again when I was admitted to the hospital for my octreotide trial. Despite the nurse leading us to my room, as I was being pushed in my wheelchair, when she completed my admission paperwork she said “you’re fully mobile aren’t you?”. What made it even more galling was she was resting her foot on my wheelchair at the time. Next to her was a walking frame I had been using, along with my stick. I did have to wonder how many clues this nurse needed to grasp the fact that no I am not fully mobile! Is it because I don’t have an obvious disability that people seem to think either a) I just use the wheelchair as I am too lazy to walk or b) they just don’t think before they open their mouths? These situations are incredibly frustrating especially when the staff have seen you in the wheelchair not 20 minutes earlier. If they don’t accept that I am disabled how is a member of the general public supposed to?
These are just a few examples which immediately spring to mind. I dont know what bothers me more about having an invisible disability the fact that I get abused when using a disabled parking space or the fact that even medical staff don’t seem to understand the concept of an invisible disability.
I would love to hear your stories about the problems that arise with invisible disabilities and use them in a blog post to highlight the issues we face.
Clearly I am too glamorous to be invisible! Friends refer to this picture as mys “Patsy” picture – suggesting I look like the character Patsy from the TV series Absolutely Fabulous!