Amy tweets at
@thisisamy_ and blogs at ‘In bloom‘, where this post first appeared.
I’m writing my thesis on the psychological impact of cerebral palsy, for which I’m doing a lot of background research. So I’ve been inspired to write about the link between my type of CP and mental illness. This is something which I have a wealth of experience on, so I figured I’d write a bit about it.
Let me start off and say that if you’re not already aware I have both depression and anxiety. The anxiety I’ve had ever since I can remember and my depression has come on more recently. I’m currently receiving treatment for the depression and it’s helped me massively. The anxiety tends to wax and wane, depending on what is going on in my life. However, I’d say I do have an anxious disposition.
So anyway, I did some research looking at how frequently mental illnesses, mainly mood disorders coexist with hemiplegia and the results blew me away. One study by Goodman (1996) found that in their sample of children with hemiplegia 61% had some form of psychological problem, which is huge. Let’s not forget that this number may be under represented as not all people feel comfortable talking about their mental health. There’s also been research showing that kids with hemiplegia tend to have higher rates of psychological problems compared to other kids with different types of CP, and also those who are similarly disabled but not by hemiplegia. This seems to suggest that there is also damage to the brain in the part controlling cognition and emotion as well as damage to the brain which results in hemiplegia. Of course, because mental illness is largely invisible and sometimes difficult to diagnose it is harder to establish the link and causality. Needless to say, I was shocked when I read this. A part of me was a little angry and relieved at the same time, because it would have helped if I’d known sooner that there was a convincing link between hemiplegia and mental illness. If the results are repeatedly replicated I’d say that mental health screening would be a good way to go. As well as publicising the link between hemiplegia and mental illness.
I do of course think that there are other reasons as to why mental illness seem to be more prevalent amongst the milder forms of cerebral palsy like hemiplegia. It’s quite difficult to word this and get the tone right. In my experience, I’ve always been compared to able-bodied people. I went to mainstream school, I’ve done very well academically. Sometimes I’ve struggled to come to terms with having a disabled identity and the fact I do have limitations. Partly because, throughout my childhood I was like every other child. Ok, some things were difficult/impossible due to my hemiplegia but for the large part I was ‘normal’. It’s only as an adult, that I realised it was a struggle to keep up if you like. I hate to admit it, but my independence does have a limit. I’ll always need help with certain things like tying shoe laces, with meal preparation, domestic chores, I could go on. I’ve realised it’s going to be tough out there in the workplace for a graduate, let alone one with a disability. Due to fatigue, I’ve realised working part time is probably my most realistic option. I’ve realised that if I have children, I’ll need a lot of help caring for them. If I learn to drive, I’ll need an adapted car. So my disability does have a major impact on my life, however much I try to deny it. I’d be lying if I said this wasn’t difficult to accept when I was in my teenage years. It can be quite anxiety provoking knowing that you rely on others for help, yet are expected to fit in and participate in the mainstream environment.
I think my card has always been marked mental illness wise. My anxiety has always been with me. Even as a small child. I tend to be quite irrational and I do have a tendency to catastrophise and blow things out of proportion. My anxiety was probably at it’s worst when I was around 16. My anxiety was centred around my health. I was constant convinced I had a serious illness. I get frequent pain because of my hemiplegia and the muscle tightness it causes. I also get repetitive strain injury in my right hand frequently as it does so much more stuff than it probably should. At the time I didn’t realise it was my hemiplegia causing such pain, I was googling my symptoms (never do this!) and getting horribly scary results. The doctor’s didn’t tell me it was my disability causing the pain but I figured it out for myself eventually.
When I went to university I did have counselling to help me get to grips with my anxiety (CBT has stupidly long waits) I’d say it helped me understand why I have anxiety but long term it hasn’t really helped. I have accepted now that I will always be vulnerable mentally. Like having hemiplegia, having a mental illness is a constant learning curve. I’ve been told that having hemiplegia does put me at increased risk of depression and anxiety because my brain is more sensitive to changes in brain chemistry. I suppose it makes sense. Having depression has took me on a journey of self discovery and is teaching me life lessons. It’s okay to ask for help if I’m struggling. There’s really no shame in it. My self esteem took a bit of a battering thanks to depression. For a long time I thought my ambitions to be successful were unrealistic. Now I realise that’s really not the case.
I’ve also realised I don’t always have to put on a brave face when it comes to my hemiplegia. Living with a long term condition can be tough and frustrating at times. You live with it day in ,day out, there’s no respite. I’ve always felt there’s something wrong about complaining about my hemiplegia and if it causes me pain. Purely because I used to get told ‘there’s always someone worse off than you” While yes I agree, saying things like that is wrong on the basis that it makes you feel guilty for how you feel and to dismiss real feel feelings as trivial and selfish is harmful long term. No-one is super human when it comes to dealing with their problems.
Sorry if this seems an overly negative post. I just wanted to highlight that mental illness commonly co-exists with hemiplegia, and to explore the reasons why this may be the case. Of course, there’s no shame in having a mental illness, they are extremely common and are treatable. I think exploring why mental illness appears to be so prevalent in hemiplegia cerebral palsy is important. I think in doing so, we can maybe tackle the causes and hopefully this may reduce. I am perfectly okay talking openly about my mental health. Mainly because I think it encourages me to be a more open person. Also because talking openly helps break down the stigma which wrongly surrounds mental illness, and it may help others.
Thank you for reading,