Monday, 30 July 2012

Hemiplegia and Mental Illness...

Hi, first off let me say a huge thank you to everyone who gave me amazingly supportive feedback on my blog post about hemiplegia. I was overwhelmed, and honestly never expected it. So, as you know 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,




  1. Another beautifully frank and open account. This resonates deeply with our experience of my son's relationship with the world about him and his emotional response to it. Those of us close to him know this is something to watch for as it is clear that he feels greater distress, anxiety, heightened disaster reactions which leave him at times bereft. No quick fixes, but acceptance opens the way to understanding. That's not a bad start. All the best with your masters, it's a worthy subject for research.

  2. im so releaved to find your blog Amy. i have a son age 17 with right sided hemi and severe problems with accepting his disability. He wonr accept any help and blames me for everything. I hope reading your blog will help me to understand my son and what he is going through until he finds a way to accept himself. u are very insirational, keep it up x

    1. Oh I'm so sorry to hear that :( it is a difficult journey. At 17/18 was when the whole hemiplegia really hit me. I remember thinking ' oh it's with me for life' it really hits you that their are limits to your independence and I remember my mum really trying to convince me that I needed support at university. Rest assured, I got through it. You have to give yourself time to adjust to new challenges and find ways of coping with it. If you ever need to chat about things my email I honestly don't mind xxx

  3. A great read! I myself have right sided hemiplegia. When I was young I was treated for the physical ailments but never had any mental therapy/testing so this article is very interesting.

    Would you recommend going to the doctors/psychologist regarding mental health? Did it help considerably? I like you, suffer from large bouts of anxiety, mood swings but also become incredibly obsessive about certain things. Sadly whenever I have stated that I think I may have mental health issues my family dismiss it or say it's just me being silly.... (Tend to daydream quite alot and say/talk about random things) - Pretty much highlights your invisble symptoms theory

    My experience of school was very much like yours. My parents tried to not let it affect me and treated me like any other child. I guess I have become quite independent but a recent visit to the hospital/consultants comments made me realise that I must remember I have a disability. ( Saying he was impressed that I was operating as a full member of society )

    I may be waffling on a bit but its nice to read info/speak to someone else who has the condition and understands what its like.

    I've started to see my condition as a challenge in some respects and i'd urge all sufferers to do the same. Try stuff, give it a go and whilst you have to remember you have certain limits, do not let it stop you from having fun and achieving your targets.

    I learnt thai boxing for 2 years and got to a pretty good standard (Left roundhouses were still shocking though :P) and last year I got really fed up of being weak on my lefty so I took up gyming/bodybuilding. It's incredible how much stronger I feel. I can't do certain exercises and my left wrist stablisers are still weak but it is a nice feeling i guess.

    Anyway, waffling to much. Thanks for the article and good to see other hemi's are doing well :)

    1. Hi J! Thanks for taking the time to read and comment. Well I would totally recommend going to your GP there are things that can be done to help, like medication, cognitive behaviour therapy. Okay, it might not cure you completely but it can lessen the impact. Anxiety is very distressing and if there's help there you should take it. I've also found that sometimes people do dismiss mental illness as 'oh you're just having a bad day' but if things are persistent you should seek help. I'm on antidepressants now and they've helped tremendously. With regards to the mood swings, try changing your diet a bit. Introduce whole grains, oily fish and bananas as these can help keep your blood sugar levels stable which might help with mood swings.

      I know, it's easy to forget you have a disability but certain things bring it home. It's great that you have such a positive attitude towards hemi. I think that's the best thing you can have against this condition because things aren't easy so you need to be determined! Well done on the thai boxing! That's awesome :) I'm hoping to improve my swimming. I can swim quite well (like a length) but I want to go further!

      Take care & here if you ever want to chat!


    2. Hi
      I have just stumbled upon your blog whilst researching for my daughter who is in her early 20's & has a right hemiplegia & has just suffered an alarming, sudden bout of back pain & co-ordination loss (she was walking sideways, tripping over her own feet!! - we will be visiting the doctor on Monday). I had no idea that the 2 were linked.
      My daughter suffers from anxiety in a huge way, it goes beyond shyness, her brain almost empties when she is under stress (which can be brought on by a very everyday event, such as speaking to a shop assistant etc).
      She does suffer bouts of depression, which I assumed were inherited from me - so I suppose she may have double the trouble so to speak.
      I will look forward to reading more of your compelling writings, (my daughter is still suffering from disability-identity issues, & is reluctant to research or identify with others online).

      kind regards & best wishes :) Also many thanks for sharing your wisdom on this subject.

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  5. Thanks Amy! I am so grateful to have found you on the Facebook group. I now feel validated that, when dealing with my daughter's mental state, I have NOT been blowing things out of proportion.

  6. Amy,Thankyou for your Blog I have really enjoyed how you expressed youurself and it certainly makes me understand why my son is up and down,Somedays it is difficult for me as his mum, luckly I have a brilliant relationship with my son and we talk about everything Ive noticed the last 6 months he wasn't talking to me or his dad like he used to do and Im so glad that I booked him in to the Doctors last week and he's now taking medication fingers crossed this will help..I did'nt go into the doctors room with my son as he said he would be ok I wish I had gone in with him I would have put across he has Hemiplegia I know its on his records but he isn't one to go to the doc's if he can help it,we go back in a couple of weeks to see the doctor again and I will be going in with him.[when the doctor asked him why he was feeling so low he said he just didn't know why] thankyou again Amy I am going to show my son your blog and he may realise he isn't alon with these feelings..

  7. I have hemi too and i always thought i was mad insane irattional for getting so upset over ppl ignoring me or not being able to play x box ....i suffer bad with low self esteem and depression too ...this blog is brill currently at uni doing psychosocial studies and i really wanna do so much more research on this ....Thank you soo much