Disabled people and mental health - why is the support so poor?

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Gaina

Victoriad said:

Yes and even more strangely when consulting Advicacy services no mention of Agency made there either.

I wonder if the concept of Agency exists in Scotland?

I think the 'establishment' is still catching up with clients on concepts like Agency . It seems to be a grass-roots consesus that we know more about our own needs than so-called experts and rightly we're beginning to insist we are heard and respected.

debbiedo49

@Gaina I like the sound of that but we need more resources to make any system work

Gaina

debbiedo49 said:

@Gaina I like the sound of that but we need more resources to make any system work

Definitely. I think it's getting better but they need to involve more disabled people in decision making processes.

Belinda_501

criptacular said:

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.

Belinda_501

Oh gosh it's not going to get better anytime soon!!! And I have been made disabled due to the Hospital and surgeon in orthopaedics!!!! I am so giving up

Belinda_501

And no help with y mental health issues!! I have not left my house for nearly 7years socially and only to hospital with my daughter! Now the physical disabilities and chronic pain means that Physiotherapy and NHS Mental health simply blame each other and I still can't get help!!!! 

leeCal

When I mention a physical ailment to my doctor it’s assumed that it’s due to my mental health and I’m referred to a psychiatrist. Amongst other things I have very very loud tinnitus and the medical people were suspicious that it was a mental health problem, when I saw the psychiatrist he increased my medication and though I complained about 5is he asked me to bear with him and think of it as an experiment! My tinnitus was worse if anything, why? Probably because one of the side effects of the medication is...tinnitus! 
I understand how the doctors have a bias like this, sometimes they may be right which is why they persist with this way of thinking, equally sometimes they are very wrong but due to cognitive bias they continue to doubt a physical ailment, maybe even suggesting it’s psychosomatic. 
Once you’ve been diagnosed with a mental condition it’s hard to shake off the stigma and biases from people, however these medics are the very ones who are advocating that society doesn’t stigmatise people with mental health conditions! There’s the irony! They are themselves biased! 
Its hard to maintain your integrity under these circumstances  but you know you’re not alone, many of us are suffering from similar problems. We may not be there with you in person but we can at least write like this and say, be strong, hold on until things get better again. 
Take care Belinda 501.

geegee1104

My mental health issues with depression anxiety and panic attacks started years ago and I used to go to the doctor's which one appointment in every 6 weeks was no good to man nor beast and then sort my own other options out and got referred to open minds unfortunately open mines only deal with the here and now which is a part of my problem but it's stems back a long long time ago I've just been accessed through my doctor to go and see a psychologist but I really want to see a psychiatrist what is the difference between the two may I ask many thanks for a reply.
Kim

Pippa_Alumni

Hi @geegee1104, MIND have some great guidance on the differences between psychologists, psychiatrists and other professionals that you may like to take a look at.

leeCal

Psychiatrists see things from an atomic level, they try to identify the underlying chemical or biological imbalance and then home in on the appropriate medication to treat it. Psychologists bear in mind chemical imbalance but do not prescribe drugs. A psychologist may well advocate a range of psychological approaches which in various ways alter the way you think about certain significant things in your life. This can be effective because of learned associations during a lifetime for one thing, for example cbt can help modify our habitual ways of thinking. But there are other methods such as psychoanalysis, which is long term, expensive and not available on the nhs. 

The only advice I would give is to think carefully before agreeing to take medication but I’m sure a good psychiatrist will tell you this. Most medications have side effects and withdrawal symptoms which are worth knowing about in advance of taking them. It shouldn’t be viewed as a quick fix in my opinion and experience.

These subjects are huge of course and I’m not an expert by any means. There are plenty of definitions and explanations of psychiatrist and psychologist online.

leeCal

Incidentally as I’ve mentioned elsewhere, according Dr Joanna Moncrief, a psychiatrist, the drugs which psychiatrists prescribe mask the underlying problem rather than cure it. They can also give you inbalances which priorly you didn’t have. It’s worth reading her kindle book “a straight talking guide to psychiatric drugs” to give you some insight into such drugs, how they work or often how they still don’t know how they work or even if they do etc.
knowledge is key.

geegee1104

Leecal.
Thankyou for your reply..
 I definatly agree with staying away from drugs to help.

EmmaB

From my perspective leeCal is spot on psychiatric drugs don't cure issues such as depression/anxiety, in most cases they just provide a sedative effect which can make people 'feel' better.  

There is no known chemical imbalance which CAUSES mental health issues but it suits the psychiatric drug industry to continue the myth because they make rather a lot of money out of it!  

The myth is also damaging because when people are told they HAVE depression or anxiety or whatever then they feel they can't do anything about it; what's more useful is to consider why people are feeling depressed, anxious or whatever e.g. loss, trauma, PTSD, poor relationships etc etc.  Unfortunately dishing out drugs is quicker than that route though.

leeCal mentions the Straightforward Guides which I think are excellent - easy to read and informative, they include:  A Straight Talking Guide to Psychiatric Diagnosis, A Straight Talking Guide to Psychiatric Drugs and a Straight Talking Guide to The Causes of Mental Health Problems.  

leeCal

For anyone not interested in reading the aforementioned book I should say that if my understanding is correct Dr Moncrief was of the opinion that medication does have an important role to play but especially if used temporarily to assuage the symptoms during crisis. This temporary relief can be exactly what is needed until some one is able to progress from a position of stability. She also has nothing to say about withdrawing from medication, and rightly so since it is best done on a case by case basis and with the co-operation and guidance of a psychiatrist familiar with the patient or case or both. 
My advice is strictly non professional as I am not qualified in this field and my only knowledge of the subject is through personal experience of being a service user.
take care.

Chrissieh

It saddens me to hear people are suffering with their mental health, as a disabled person and counsellor it is very hard to make connections in areas where a difference can be made. I was hoping Scopes work with me scheme would have provided opportunities!!

Waylay

Chrissieh said:

It saddens me to hear people are suffering with their mental health, as a disabled person and counsellor it is very hard to make connections in areas where a difference can be made I was hoping Scopes work with me scheme would have provided opportunities!!

Hi @Chrissieh, I bet if you go to your local Pain Clinic, local disability support groups in your area, and craft groups (knitting, etc., particularly those that meet during the day), you'd find some takers! Before I found my current counsellor I would have jumped at your offer. 

Waylay

1/2
I've taken 14 psychiatric meds over the past ~24 years, my Dad was in pharma testing when I was growing up, and I'm a very bored researcher w/ way too much time on my hands. I know way too much about psych meds. (If only that were useful in contexts outside of spewing-all-your-med-knowledge-onto-the-web.)

I agree that the whole "brain chemicals" thing is shifty. You can't measure them without drilling a hole in the skull, and nobody's going to approve a study involving that! You can measure them in the blood, of course, but how do the concentrations in the blood compare to concentrations in the brain? I don't think anyone knows. The gut is now being called "the second brain", and a lot of serotonin activity takes place there. From the way my tummy reacts to switching meds, anti-D's definitely affect the gut, but whether that has anything to do with mental illness.... *shrugs*

Anti-D's definitely have side effects, but everybody responds to medication slightly differently, different meds can cause very different side effects in the same person, and changes in dose can magnify or reduce side effects a lot. If the side effects of med "X" at dose "d" are worse than the symptoms of your illness, then it's probably not worth taking it! I get a lot of side effects from my meds, but they're still better than not eating, sleeping, washing or speaking for days (and then there's that pesky suicide thing). :P 
FYI: side effects tend to lessen during the first few weeks of taking a med (and occasionally they disappear!!), so it's worth sticking with them for a bit.

Discontinuation syndromes are something that's not talked about enough, but you don't tend to run into them with the first-line anti-D's at starting doses. Prozac doesn't seem to have one at all. For other SSRI's and SNRI's, generally the shorter the half-life* of the med, the worse the discontinuation syndrome will be. DS isn't addiction (you don't get cravings for Duloxetine, and you're not going to sell your dog to get a few Venlafaxine capsules ), however depending on the med, the dose you're on, and the way your body interacts with it, the DS can be anything from vaguely annoying for a week to absolute hell for months. I'm on the max dose of Venlafaxine, and if I take a dose ~12 hours late I can already feel it starting. I went 52 hours without it once (hospital screwed up) and I will NOT be doing that again in a hurry. But fear not! If you want to get off of a med and you get bad DS, you can reduce the dose of the med very slowly, over several weeks or months, and keep the DS at a reasonable level. Many GP's assume that 2 weeks is long enough, but it often isn't. 

*(if you take a dose of a med then the half-life is the amount of time it takes for half the dose to be used up by your body)

Chrissieh

Thank you for comment. These groups are very limited in my area, i just hoping to for others ways to connect with people with disabilities.