Did you know that April is Stress Awareness Month?
To help get people talking about stress and mental health, we asked one of our Active8 members about their experience of stress and how their disability impacts what stress they have and how they manage stress.
Here’s what Chloe had to say…
Does your disability cause you stress?
I'd say that having a disability, especially one that can be unpredictable, is very stressful. I don't know what's going to happen next year - one day I can be fine the next day I can’t get out of bed.
For me, it’s stressful not knowing why what's happening is happening and I'm just being told to deal with it. I would personally find it a lot easier to deal with if I had a diagnosis so I can do some research, find people with the same condition and see what they have found helps, and trial that, rather than being left to muddle my way through like I have been.
It’s also a lot harder to get help from medical professionals and the government when you don't have a diagnosis because you have to explain your whole medical history before they give you anything… and considering I've been fighting for a diagnosis since I was five, I have 15 years of medical history that I have to explain to them.
What stresses you day-to-day?
It’s hard being in a wheelchair. It is so stressful and people don't like giving you allowances.
Annoying things like transport... for example, bus drivers don't let you on the bus and then you’re late to hospital appointments… sorry I'm still very salty over that situation!
Care! If one of my PAs is late and they’ve not sent me a message I get very stressed because then I don't know if they’re ill, if they’re just running late, I don’t know if they’ve forgotten, and I don’t know if there’s someone coming in for cover.
So, I don't know if I need to go through the struggle of trying to get myself up and ready for the day on my own which… not only is that stressful but it means my pain level is going to be drastically increased. And, if I've done some like swimming the day before, I might not even be able to get out of bed at all.
What stress do you think you have compared to someone without a disability?
There's a lot to think about and it takes a lot longer to sort things out which makes it more stressful. You think it'll be alright and then you remember you're disabled and there’s at least ten more things that you have to consider compared to the average person.
They don't have to stress if their wheelchair isn’t charged! Sometimes you just forget, or you think it is plugged in and the plug comes out the wall slightly. If my chair is not charged, I'm literally stuck, I can't really do anything. I definitely couldn't leave my room, especially when I'm at Uni. I couldn’t even go to the kitchen because it's too far for me to walk.
Whereas someone who doesn't have a physical disability will get up, chuck some shoes on and they can just go.
Does your disability impact how you cope with stress?
I would say so, yes. A lot of people (if they're stressed) they can go and do something like exercise. Which is much harder for me.
If their stress means that they feel certain way all the time, it's easier for them to find hobbies or support to get help with that. Whereas I've got to take into account if places are accessible and can I physically deal with that today… are my pain levels OK for me to go out and do something? Have I got support on that day to go out and do something?
There is a lot more you have to take into account before you can deal with what you're feeling.
Does your disability affect how you stress about the future?
Yes! Something that's been in the back of my mind is… when I finally finished my degree and I find a job I want to do, where am I going to live?
The council system isn't the easiest to navigate and so trying to find a suitable house, or getting a house set up for me, could be quite difficult and intense.
I know a lot of people have had trouble with it in the past and so it is something I stress about. If I knew where I was going to be then I could get started on the process, but I don't have that luxury so… what if I get a job somewhere but I only have three weeks to find somewhere to live?
Most people could find a hotel for a month or so until they could find a better place. I can't even guarantee that I'd be able to find an accessible room in a hotel.
What needs to change?
I think there needs to be a lot more support mental health for people with disabilities.
I'd always struggled with stress and anxiety since I was little, before I knew I was disabled, but since being a fulltime wheelchair user, I would say depression and stress are harder to deal with. Especially for me where I remember being able to walk and run and play and do all the things that an average person can.
It shouldn’t be so difficult, there should be more help available... financial help, mental health support, support with care. Everything takes fighting for it to get what you need. It makes it tough on your mental health.
Watch this space for our upcoming blog on managing stress.
Watch this space for our upcoming blog on exercise hints and tips for wheelchair users.
About the interviewee
I’m Chloe and I have been a member of Active8 since January 2020. I have an unknown neuromuscular disorder that causes paralysis of my lower limbs.
I am currently studying chemistry at university and have a great love of astronomy. In my spare time I enjoy archery and compete for our university team.
The small print made big
The Active8 blog is designed as a platform for our members and the disabled community to share their personal experiences and discussions which they are passionate about. Any views and opinions expressed are those of the writer and do not necessarily reflect the views of our charity.
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