Did you know, that the 18th – 24th October is Invisible Disabilities Awareness Week?
I wasn’t aware of this until recently, but it really resonated with me, so I wanted to write a bit about my own experiences around this topic.
What is an invisible disability?
According to Scope, there are over 14 million disabled people in the UK. The majority of these are not “visible” to other people. Invisible disabilities may include conditions such as mental health conditions, hearing/vision problems, learning disabilities, conditions that cause chronic pain/fatigue such as, fibromyalgia and ME, back conditions like scoliosis, arthritis, lupus, diabetes, respiratory conditions, cancer and many more. The list is endless really.
The point is, the majority of disabilities are not visible, which can lead to a lack of understanding from those not affected.
I don’t usually refer to my scoliosis as a disability, as I’ve always thought it sounded limiting. But I guess it is in many ways, and there’s nothing wrong with that. It’s a chronic condition, which means it will not get better, and as a result I suffer with chronic pain, neurological issues, mental health issues and reduced lung capacity. To look at me, you wouldn’t know that my spine is curved into the shape of an “S” and that I have two titanium rods and 20 odd screws holding me up.
Now don’t get me wrong, I know that there are others out there who are much worse off than myself. I try not to let my scoliosis stop me from doing things and I know that I am incredibly lucky that I still CAN do things, such as run half marathons and hike up mountains.
But that doesn’t mean that my scoliosis doesn’t affect me. It doesn’t mean I’m not in pain or uncomfortable when/after I do those things. Just because I look fine, and I look fit and healthy and run half marathons, it doesn’t mean I’m not sometimes struggling inside – mentally and physically.
Some of the feelings I have felt/feel on a regular basis include:
Guilt – I feel guilty all the time. I hate the fact that I need a special office chair at work that costs more. I feel guilty if my back is hurting and I take the last seat on a bus, as I feel like other’s need it more or that people are looking at me and wondering why I’m not letting others sit down. It’s for this reason that I often stand, even though I’m in pain. I would never sit on the seat that’s reserved for people with disabilities, as I’d feel too guilty, which is stupid really.
Frustration – Yes, I can still do most things but certain things I have to adapt as I cannot bend my back (I’m fused from T3-L3). So simple things such as tying my shoelaces and getting in and out of cars can be awkward sometimes. I’m not complaining, as I CAN do those things but I have to adapt. I get frustrated when people expect me to be able to do things that I cannot (such as when I got pressured once to join a game of limbo, and then called boring etc). Or when people park ridiculously close to me and then I can’t get into my car. I think as I look fine, people don’t realise that my condition affects so many parts of my life – they are often surprised when they realise. I also get frustrated when I can’t do as much as others in terms of running, hiking etc. I am grateful of what I can do though and I know that this doesn’t make me a failure, it can just be hard sometimes.
Loneliness/isolation – I talk about this more in my post scoliosis and mental health, but living with an invisible/chronic disability/condition can be very isolating. This can trigger feelings of anxiety and depression. I often feel like nobody understands how I feel, which makes me feel quite lonely. People often don’t believe that I’m in pain or discomfort and Drs don’t take my neurological health concerns seriously, which makes me feel like a hypochondriac.
Embarrassment – I have felt embarrassed about my condition in the past, too many times to count. I don’t often speak out when I’m in pain/uncomfortable and just get on with it. I don’t want to be a burden to anyone else. A couple of examples – in the past I have taken cushions out with me to restaurants, as the chairs can be uncomfortable. I do feel embarrassed doing this so more often than not will just put up with it. I have also felt embarrassed in the past asking for help carrying luggage and getting my luggage down from the hold on a train/plane for example. Things like this I struggle with and seems to be expected that everyone can just do it.
I feel like I could go on!
It’s important to understand though that everyone’s experiences with scoliosis are different. Some people’s scoliosis may be more “visible” than others depending on severity, some may experience chronic pain and debilitating symptoms and some may not. These are purely my own experiences, thoughts and feelings and I appreciate others’ may be different.
I do feel though like that there needs to be more awareness and understanding around “hidden” conditions such as chronic back pain and scoliosis.
What are your thoughts on this topic? Can you identify with any of these feelings? Let me know your own experiences in the comments.
For more information on Invisible Disabilities Week how you can help raise awareness – visit Invisible Disabilities Week.
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I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.