Disabled people and mental health - why is the support so poor? — Scope | Disability forum
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Disabled people and mental health - why is the support so poor?

criptacular
criptacular Member Posts: 4 Connected

Errol Kerr is a student, editor and blogger, focusing on everything from politics to gaming. Through his blog Criptacular and on Twitter, he tackles discussions on mental health, physical health, disability and neurodiversity whilst constantly making sure to keep an eye on his own.

In the past three years I’ve been referred to multiple therapists for my mental health. I’ve walked away from all of them for the same reason: they can’t see past my disabilities.

Whenever I’ve been to therapists, I aim to go in to talk about feelings of anxiety and depression, both of which are incredibly prevalent in my life. For disability context, I’m autistic and have hypermobility syndrome - the latter of which causes a significant amount of pain, the former causing noticeable social communication difficulties.

The anecdote for my leaving therapy sessions is almost identical. I’ll book in an appointment to see my GP so I can discuss my mental health and ask about support. They refer me to a therapist before taking any “other actions”, even when I’ve indicated therapy has been unsuccessful before. After I’m booked in for therapy I make my way to the therapist to discuss my mental health.

The moment I disclose my disability and condition, the discussion veers entirely from my mental health concerns and focuses solely on these other external conditions. I attempt to explain that the issue is to do with other factors in my life that I want to talk about, but the professional always comes back to ‘difficulties’ I must face due to these other experiences. At these therapy sessions, any and every issue with my mental health is connected in some way to these factors.

I felt I was being told that my mental health issues were there because I was disabled. 

 

Thing is, I quite enjoy being autistic and I manage my pain relatively well. The problems I face with my mental health have very little to do with these other experiences and I’ve stumped professionals more than once when I tell them that in reality, I’m managing these other experiences rather well.

After one of these therapy walk-outs I had a discussion with a friend of mine who is also disabled. They informed me they’d had an almost opposite experience with their GP, whereby they had been told they “can’t” have certain mental health difficulties, often because they’re disabled and “already have it bad enough”.

Sometimes it just feels like we can’t win - either we’re too physically disabled or neurologically different to be mentally ill, or if we are, it’s entirely because of that.

 This is an important topic to recognise as there’s a large number of people with physical disabilities or neurodivergent conditions who also have mental health difficulties. It’s common knowledge and well-documented, but it’s something I fear that people don’t know how to recognise, don’t know how to acknowledge and are woefully unequipped for. It seems that, to everyone I’ve tried to speak to, correlation equals causation one hundred percent of the time.

It’s so important to recognise that support for disabled people with mental health difficulties is remarkably poor.


We’ve been taught to think of these things as different experiences – as one thing that can cause another, rather than individual experiences that can indeed impact each other but aren’t intrinsically linked. It feels like the likely issue with chemical imbalances in my brain were ignored in lieu of talking about how I can’t walk without an aid, or struggle talking and making eye contact simultaneously.

I’m planning on going back to my GP soon, as my mental health isn’t great at the moment. I plan to put these exact words in front of them, explain to them that whilst my body needs assistance, my mind needs some support that’s separate from that.

Whether rooting our mental health into our disability or denying its existence due to it, this attitude makes us feel lesser, inferior, and only leads to some of the most vulnerable people in society being ostracised and pushed away from support.

So, I want to start a discussion.

I want to have a conversation with disabled people who have sought mental health support, to start talking about the difficulties we’ve faced. I want to open up the floor to people who have been denied adequate mental health support by people who can’t see past physical or neurological conditions, chronic illnesses. I want to talk to people who have been let down by those who, when asked about the mental, couldn’t see past the physical.

Have you experienced similar issues? Have you had perfectly fine experiences seeking mental health support? Are you scared to seek out this support because of this issue? Let me know. We can’t make change by keeping silent.

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Comments

  • [Deleted User]
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  • criptacular
    criptacular Member Posts: 4 Connected
    Hey,
    Simply put, a choice should be offered. Agency should be offered.
    Do you think that therapy would have been more effective for you? You should have had that option, rather than being forced down the medical route. 
    I, personally, would quite like the option of medication to be brought forward and I've mentioned that twice in GP appointments - and it's never considered, which is why I didn't really bring it up in my blog. 
    I don't necessarily think that new alternatives need to be created, I just feel that the current ones need restructuring to accommodate more for the people they're caring for. I'd love to come up with new alternatives for mental health, but I'm unfortunately not equipped to think of stuff like that.
    If medication has severe side effects and certain actions aren't working, other options should be considered before enforcing certain elements. I obviously don't know the extent of things for you, but I would, in an ideal situation, have consulted you about the best course of action moving forward. 
    It doesn't seem like that was done - which is precisely the issue.

    I should expand my own quote: "denied adequate mental health support by people who can’t see past physical or neurological conditions, chronic illnesses". to mention mental health at the end of it, as we know that, with mental health, they either don't see it or can't see past it, either. 

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  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    When my mental health spiralled out of control again in 2010, my GP advised me to self refer to a local charitable service to get help quicker (CBT) and hopefully get better quicker which I did. What he should have done was referrred me to the NHS team at the same time. I’m saying this because resources are limited so you aren’t always getting as much support as you need and it’s very much a sticking plaster on a broken leg. So two years down I’m stuck in the same place asking to be referred to the NHS team! This particular GP seems averse to refer on for most things to be fair. Then I get a minimum amount of therapy again CBT to get me a little bit better as long as I jump through their hoops and meet their goals. Now, 8 years on, I may need to go back down that route as I’ve gone as far as I can on my own. The best service I have received has been the ongoing support from the local charitable service even though I’m not getting therapy I just use other services they offer. I wish they had more resources. They are good at their jobs. I don’t blame the service providers I blame the funding providers. Just look at the CAB service! They used to go to DWP appeals etc with you now they don’t! GP s charging for letters to DWP for people on benefits because it’s taking up their time! And so it goes on. 
  • feir
    feir Member Posts: 395 Pioneering
    I had the opposite, more that my 2nd therapist didn't understand the amount of pain i was in was what made me feel suicidal, and that was my main source of wanting to be dead, i don't think you can understand just how debilitating chronic and severe pain is until it happens to you. So in way she didn't understand me partially but after talking for a few weeks she did eventually. I find it sad that your therapists are not listening or not questioning you more to understand you.

    Apart from that she was great, so overall i think she was good and helped me out way more than i expected. she has even recommended me to services that might be able to help me out as that was part of my discharge.

    I got to choose what services i could use, i did CBT first as i was diagnosed with moderate depression and told that would likely help me, it didn't as i have the right mindset already so when being assessed next the lady from CBT noticed that i wrote a lot down and said that maybe talking to someone would help so i went for online therapy (i couldn't walk at all at this point and seeing someone irl would take about 4 months at least to wait so this seemed the best option). That worked out well for me. I also got to choose my therapist based on what their expertise is in. The online help you could also use a forums that other people with mental health problems were using and talk to them, support each other.

    I hope you get the proper support you need, it can make a big difference.


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  • littleruthie123
    littleruthie123 Member Posts: 490 Pioneering
    Wow Victoriad ,that sounds awful beyond awful I'm sorry you were treated that way .thank you you've made me think about the other side of it .i will be more patient waiting for my therapy .we seem no further ahead with mental health in this country .so many people suffering alone with no sight of any help ,and financially either .no wonder there's such a high suicidel rate 
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  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @criptacular Pleased to meet you. Seems all the experiences I have fall into you are seeking help because you are disabled. The disability you have is the main the reason you are mentally ill.

    Had this from numerous therapists who misunderstand everything you tell them.   All out of University new and shiny smartly fine looking young women who have no idea about the lives of their clientele.

    Not in the degree course does not match up to what I am telling you.  You are wrong. Not in the textbook. Hang on my mental illness caused by addiction.

    My disability genetic  Yes I have had problems being simply disabled who does not . Do that and seek that you are having problems adjusting and identifying  Being the way you are and then you will can cope with your mental health.

    Echoing all the time. More time spent her talking one young woman about the virtues of my disability. Causing my mental health and I am in the wrong constantly. Ended up going her ranting and talking after 25 sessions. Some of the time just sitting listening. Passing judgement and me my mind wandering. Thinking about other stuff.

    Twenty plus years and on the medication the right one. Only after failures of these doomed sessions.  Am now always feel for. To hear about others experiences and have my thoughts for them.

    Understand every body's stories.  The system is bust we all know that.  Underfunded over whelmed and very stressed staff.  Tell me about it. Support workers working late at night to do paperwork. Reply to my bedtime stories or sagas I have sent them.

    On line had many a message . Ended up reams of stuff to some one who will listen and read. Nothing changes .

    How can we mend a broken system what has to change. Arguing and playing a vital part. Should be us the clientele. One time NHS had group sessions and meetings. To involve the public consultations. I became involved and have memories of trying to put my argument across.

    All on deaf ears. All wasted time.

    Please can I also say acceptance of your disability is the right way forward. What is not acceptance is giving people who have mental illness. The choice of treatments.  CBT for all . It does not work Why is it working for others not me. I holler. Everything is CBT. Why is the magic cure. What magic cure is mindful ness.

    Does not work for me as well. All treatments either or. Yet in discussions I am frustrated by lack or empathy from organisations unwilling to support me in just having common sense.

    What is the point I ask my self.

    Having been booted up the bum many times by support workers. Some really great and steering me in the right direction. Others because it more than their jobs worth.

    Kick up the bum to you because how dare speak about your own views and opinions on treatment. We are the support workers not you.  Hang on I am the ill one do I have a say.  Yet seems not and so the conveyor belt rolls on.

    They decide if your well and out you go. . Blundering around wandering around clueless where to go.

    Have no social skills and expect others to help and give advice.

    So what can we do. 

    Take care

    @thespiceman
    Community Champion
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  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Could easily be that I'm misunderstanding here. Forgive me, please, if that's the case.
    Having suffered from depression since childhood, and having narrowly escaped ECT in my late teens, (I'm now 66, almost 67) I was prescribed citalopram probably a decade ago. It made a significant difference, and continues to do so though I've reduced the dose somewhat. The thing is that I don't have any other 'disability', do not consider myself disabled and am not perceived as disabled by my GP or society at large. My medical issue is essentially brain chemistry, which is being treated as such.
    Now, if I were disabled - if I were autistic or in continuous pain - would the doctor have seen past the disability and recognized that I needed the psychotropic (?) citalopram? I think probably not.
    Does that make any sense?
    Best to you all,
    Richard
    @JennysDad

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Depression is a mental health disability @Richard_Scope . I now consider myself to have a mental health disability although I hate labels . It seems to help you to get closer to the resources available . @Victoriad you are awesome for sharing your experiences. Thank you
  • feir
    feir Member Posts: 395 Pioneering
    edited May 2018
    What disability is autism classed as? I thought it was a learning disability, as  my son has an official diagnosis of this and his school/college also use autism on his official notes but i googled and it isn't classed as that and they are separate things. Just wondering for personal reasons and i can't find anything online so wondering if there is nothing and it is just a diagnosis on it's own..
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  • littleruthie123
    littleruthie123 Member Posts: 490 Pioneering
    My son has a.d.d it's classed as a mental disorder ,I think there in the same spectrum x
  • Richard_Scope
    Richard_Scope Posts: 3,101

    Scope community team

    Hi @debbiedo49
    You have tagged the wrong Richard :) I think you meant to tag @JennysDad
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • feir
    feir Member Posts: 395 Pioneering
    My son has a.d.d it's classed as a mental disorder ,I think there in the same spectrum x
    Thanks. I don't even know what is wrong with my son and asked him about the school classing him as autistic but he didn't know either. So i wrongly presumed they'd used that as it was the same thing. After checking on google ASD is a disorder.

    I was initially wondering something about this topic and that's why i asked but it seems irrelevant now.

    I use a mental health forums and noticed people complaining they do not get taken seriously for things like pain because they are treated as psychosomatic (which even if the pains are that doesn't mean they aren't real). Seems like all the different conditions people have can overlap and this means they don't get the correct treatment.

    Everything is off topic though i think so i'll shut up now.
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi, especially @debbiedo49
    I wouldn't suggest for a moment that depression is not a disability in the case of many of its sufferers. It is a question of degree. Retired, now, my depression does not significantly affect my ability to function in society or live my life, which is why I don't think I am seen to be, or feel to be, disabled myself, which is all I was referring to.
    I was merely trying to illustrate what I thought was the point of the article. A decade or so ago a GP prescribed a medication for me on the basis of my history of depression. At the time depression was, indeed, preventing me from living life to the fullest I could.
    What matters, I think, is whether the GP would have prescribed that medication if I had had a pre-existing diagnosis of fibromyalgia, autism or various other things, or whether my mental health issues would have been 'lumped in' with those conditions and the GP focused on treating my fibro, autism or whatever.
    As far as can be ascertained, my mental health issues appear to have been caused by a combination of brain chemistry inefficiency and my young life experience - constant moves from place to place, the separation and divorce of my parents, psychological abuse - it seems - by my mother. Were I autistic, for example, all of those things could still have been true, could still have occurred, but it seems questionable to me whether the medical authorities would ever have got around to taking them into consideration. 
    Again I'm not entirely sure if I'm making sense, so please bear with me. 
    Richard
    @JennysDad
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