I was told by someone a few months ago “not to label myself” and reading an article today has brought the question up again in my mind. Do I want to be labelled as a disabled person?
When I first got ill I would never have described myself as disabled, but I wasn’t “that ill” I just needed to adapt my life a bit. Then over the past 8 years as my health has deteriorated I think I’ve fought against the label of disabled, and now in the last year I feel as if I embrace it. But others don’t. I’ve been told by family and friends that I’m not disabled, or they wouldn’t want to be labelled as disabled. Why is this? What are the underlying feelings in society that we don’t want to have disabled as something that describes us? Also why do we have to have terms to describe us?
I’ve always fought against being stereotyped, I listened to heavy metal music as a teenager and felt alternative even though I dressed a specific way, listened to specific music and had ideas of who I was because of my interested, so I was being alternative and individual but along with others so it wasn’t really individual, it’s more a case of us all being different together, which I was aware of and found amusing at the time. I still liked my cheesy pop music, jazz and country even though my friends laughed at me, so I was fighting against being stereotyped as a heavy metal fan. Actually I was a glam metal and grunge fan, ha ha, even more specific! I liked those labels, I liked the community that I was a part of and I liked that my friends were the same as me. Is this why we stereotype? To put ourselves and others into boxes so that we can sort each other out? To give terms and identities to people that we don’t know to see if we want to interact with them, if they are the same as us then they’re good? Better?
http://www.beyondintractability.org/essay/stereotypes has some interesting points about why we stereotype and how to break down stereotypes. It talks about individuals breaking them down and how we gain our stereotypes from our parents and our upbringing which is linked to education and the media.You might have seen the recent adverts for the Paralympics. The media has labelled Paralympics as superhuman, this is starting to annoy me, as yep they’re amazing, but anymore so that other athletes? Or other people who are brilliant at what they do? Why does having a disability and being good at sports make you super human?
As a person with an invisible illness I think that the disabled tag works for me as it enables me to explain that I do have limitations and I can’t do everything that others might be able to do. I also like the term spoonie as its a bit more fun that disabled and lots of people still don’t know what that means, so I get to explain how that works and how energy levels and chronic pain can affect your day to day existence. I get that the people competing in the Paralympics are amazing, but I can’t get out of bed somedays and I struggle to have a shower so I’ve got to have a shower chair and most of the time I just don’t bother, I use my spoons for other things. I have to prioritise every single aspect of my life which is exhausting in itself. Using the spoon theory can help me to explain that getting ready to do something can take all of my energy so doing it just isn’t possible. I need to think about getting out of bed, brushing my teeth, washing, putting on make up, doing my hair, putting on clothes, taking off PJ’s before putting on clothes, walking about to do all of these things, getting some food, packing what I need for the day, walking down the stairs, getting into the car, driving to wherever I’m going. All of these things don’t just need physical power. They also need brain power, I need to focus on what I’m doing, remember what I’m doing and what to do next, I often forget why I walked into a room, or what I was doing. I try to minimise movement so do as many things at the same time as possible, this means I have to think about what I’m doing and what I need to do next so that I can take my clothes into the bedroom and hang them in the wardrobe, whilst carrying my phone and creams through, putting them next to my bed and cleaning my teeth as I walk back through to give the cat her treats before I go to bed. So while saving physical energy I’m using mental energy. Concentrating on driving is tiring, as is talking to people, listening to them thinking about what to say next as well as managing my face so that I’m not wincing in pain all the time, moving my body into different positions to minimise pain and thinking about how to move so I’m not hurting myself. I’ve probably forgotten loads of things, but this is how I live my life. Having to think about every single thing all the time is very tiring, stressful and challenging. I often get it wrong and overdo things, get frustrated when I drop things cos my coordination is rubbish due to tiredness, or when I get home and I just can’t face speaking to another person as my brain just can’t take it.
Trying to explain this is pretty impossible, I try, and I so excited about my future speaking bookings as I can see if I’m good enough to explain invisible illnesses to people. I’m taking my disability as an opportunity. I’ve wanted to be self employed for a few years now and didn’t have the confidence in myself to do it, my business is an easy and safe way to do it with the support of a company with my opportunity to work around my health and to share products that I love with people. I get to talk to people which I love, to stand up in front of an audience and tell my story, to share my experiences with new people, and as my team grows I get to coach, train and support other people to build their own business and change their lives. I get to pick who I work with and spend my spoons on things that I love doing.
Where are these people in the media? Where are the people talking about invisible illnesses? I’ve found that it’s us, it’s bloggers and fellow spoonies taking the lead and talking about it. I was in The Sun recently in an article about the fatigue clinic that I have been attending for a few years and I currently volunteer for. I was interviewed about my conditions, about how it affects me, how I deal with it and how the clinic has helped me to manage my condition, get back to work, and live my life out of the four walls of my flat. When the article was published it was linked to sleep and not getting enough. I appreciate that this is an issue for lots of people and having CFS can lead to sleep problems, but having more sleep does not help the condition. You still feel exhausted, drained, foggy and your body still doesn’t work properly so this is not a helpful representation of CFS as far as I’m concerned. I was very excited to be in the paper, but disappointed that they had missed the point! So I’m going to keep blogging, posting on social media, talking to other spoonies and sharing my experiences with as many people as I can find to listen to me.
How do you feel about labels? Which ones do you embrace, which do you disreguard? Who do you like that speaks about chronic illness, disability and invisible illness?
Let’s share the voices 😄