SEE ME, NOT MY DISABILITY
Updated: Apr 2
This week's interview is with my friend Ade who is shedding a gently blinding light on what it's like to live with Multiple Sclerosis and the impact that struggles with physical health can have on mental health.
In his own words:
Ade Couper crawled out of the swamp in Bedford a long time ago....if you were to describe him in 3 words, they would be fat, bald, & grumpy. Ade writes poetry & short stories & sadistically inflicts these on unsuspecting people at open mic events in Worcester!
1) Hi Ade, how are you?
I'm doing ok thanks.
2) How are you really?
On a scale of 1-10, I'd put myself down as a 5 today- the pain is fairly bad, so that has made my mood rather low, and coupled with fears over finding a job means I'm not as up-beat as I'd like to be.
3) What encouraged you to volunteer to share your story today?
One of the things that prompted me to do this is to show how physical and mental health are linked: I have a physical disability, but this doesn't just affect my physical health but also impacts on my mental well-being.
4) Why do you think it's important for people to try to understand what others are going through?
I think that understanding what another person is going through helps people to empathise, to show compassion, and to realise that life can treat people like shit sometimes. It can help explain, for instance, why someone will bail on a night out at the last minute, and help people understand that there are times when we cannot do things, and why....
5) Tell me about you...
Oh blimey- ok. 55, single, live in Worcester. I was made redundant a little while ago but up until then I'd been a volunteer manager for a large national charity. I'm an activist for a number of issues (I've been a member of Amnesty for almost 40 years), mainly human rights, wildlife and also disability issues. I'm a pretty good cook, I read a lot and write too (mainly poetry- I have had a couple of poems published in anthologies but also write some short stories as well) and I do enjoy getting out for a walk when I'm able to. I also live with Multiple Sclerosis.
6) What is Multiple Sclerosis?
Without going into too much detail, Multiple Sclerosis (MS) is an auto-immune disease which causes your antibodies to start attacking your nerve fibres, so essentially I've got stupid antibodies! There are about 125,000 people in the UK who live with MS. It comes in a number of forms, the one I live with is Primary Progressive MS.
7) How does MS affect your day-to-day life?
MS affects me in a number of ways. Firstly, I now live with chronic pain. To try to explain what this is like, think of how it feels if you knock yourself hard enough to bruise, that dull throbbing ache, now imagine that constantly and that will hopefully give you an idea of what my chronic pain is like. I also frequently experience chronic fatigue. This isn't just feeling "a bit tired", but genuinely having no energy available to do anything. When this is bad, trying to make a cup of tea can feel like trying to climb Everest. I can also experience visual disturbance (where I can't make sense of what I'm seeing) and issues with my balance.
8) How have struggles with your physical health affected your mental health?
The inability to do things can have a really detrimental affect on my mental health, making me feel like I'm useless. Things that other folks take for granted, say opening a tin or a jar, can be completely beyond me and I really get frustrated at this. The view of disabled people by the media and parts of society (that we're "benefit cheats" or "scroungers") also impacts on me. Up until recently I was working full-time in a very responsible job, so being perceived as a scrounger does not sit well with me.
9) On the days when you're struggling to do things physically due to the MS, what do you tell yourself?
I do often have days where I'm struggling with MS, I tell myself that it's ok that I can't do something today, I will try again tomorrow.
10) Can you remember life without depression?
Not really, unless I really strain.
11) What is the most difficult part of depression for you?
I think the most difficult thing for me is very similar to chronic fatigue- it's the well-meaning idiots who think that you can somehow "snap out of it"- the sort of person who says "smile-it could be worse!" Well, yes, it could be worse, but it's pretty bloody terrible as it is thanks!
12) Do you have any coping mechanisms you turn to when you're feeling depressed?
I read (if I can get caught up in a story, that means I'm concentrating on that rather than the depression or the fatigue). I will also try, if I feel up to it, to talk to people, whether in person, by phone or on a messenger service. I know a lot of people who are "broken" in some way, so they are able to empathise. As can I if they've got in touch with me for support.
13) What would you say to someone who has never experienced depression to help them to understand what it's like?
I would ask them to imagine they're in a bubble or a spacesuit, even though you can see the world outside and the world can see you, there is no direct contact: you are separate, not part of the world. That's how it feels to me.
14) On a day when you're struggling either with the MS or depression, what could someone else do to help you through the day?
I think the most important thing someone can do is just to be there for me, even if we're not talking about the MS, or we're just yakking about any old crap, that element of human contact is so important. Also, it means that whoever is with me is seeing the person, not the disability. That is so important- there is a lot more to me than my MS & depression.
15) Do you believe people's views and judgements about mental health issues can be changed?
I think they can be changed. Mental health and disability scare people because they're unsure how to talk to us and how we will react. Well, the easiest way to sort this is to talk to someone. As I said earlier, we are more than just our disability, we are people in our own right and we all have things that interest us! Once the general public get over their apprehension and realise that we're not that different to them, then we stop being "the disabled" & start being Ade, Jemima, or whoever!
16) What is your personal goal with regards to your mental health?
I think to stay well, to be able to cope with whatever life throws at me (to be fair, I'm getting a lot better at doing that!) and to hopefully be able to use my experiences to help others in whatever way I can.
17) Does it help you to talk about how you're feeling?
I think that depends on who I'm talking to. Despite the fact I do get up on stage and perform some quite hard-hitting poems about disability, I wouldn't be comfortable in say a group session talking about my health with people I don't know. With close friends, and to an extent with some family members, I'm quite comfortable talking about how I'm feeling. So on balance yes it does help.
18) What do you hope people take away from reading this interview?
That disabled people are people. We are individuals, we have lives, loves, likes and dislikes just like the rest of you. See the person, not the disability.
19) Tell me about something you have a passion for...
Ok, can I cheat and pick three things I have a passion for please?
Firstly, words. I love reading, I love writing too- a book is a £10 TARDIS that can take you anywhere! Secondly, birds- getting out into nature, watching birds- I find this really therapeutic, it just allows me to escape from the world for a time (have a read of "bird therapy" by Joe Harkness, for much more on this). Thirdly, equality- from my own lived experience (and from my professional experience too) disabled people get a really crap deal, often marginalised or excluded, and more often than not this isn't malicious. It's the result of idiocy. If you want to know how to include us in something, just ask us! We're the experts in our conditions (we have to be, we live with them 24/7!) so make use of that expertise!
20) How do you feel after answering these questions today?
Much better than I thought I would! It's genuinely been cathartic, thank you so much for inviting me!
Ade, thank you so much for taking the time to do this interview today. I have no doubt that this will resonate with people and create more understanding around both mental health and disability. As a huge fan of your poetry, I'm looking forward to catching up with you properly at future poetry events after lockdown.
Ade's poetry features in two anthologies, 100 memories (Dream Well writing, 2019) and call & response (Black Pear Press 2020). Call & Response can be purchased directly from Black Pear Press or from Worcester Cathedral gift shop.
If you're struggling with your mental health, please reach out for help. You don't have to struggle alone. Go to the 'support' page on this website for contact details.