For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.



4 thoughts on “For the want of a diagnosis

  1. Good grief! Over 30 years and you are only slowly getting to grips with what is affecting you. I have a little bit of insight to how that feels. For much of my life I have suffered from anxiety which could lead to panic attacks in very stressful situations. At age 45 I had a major breakdown where I wished to end my life but wasn’t able to do it. Now I was diagnosed with depression with anxiety disorders. I tried to go back to work 3 or 4 times but each time had a relapse. Then my Dad arrived in Nottingham needing full time care.
    After a stressful year on long term sick leave and with my father passing away I was pensioned off on ill heath. Like you I have had therapy some very helpful some not so helpful. Retiring has helped me and I now limit my commitments to 2 volunteer jobs.
    I know some of the reasons for my mental illness – parents who loved me but isolated me from friends and the Plymouth Brethren religion but still find every day a struggle to battle my demons and I guess that will always be the case.
    I think the people who have theses problems are usually the most genuine people around – maybe because they are aware of themselves and their issues and I seem to keep meeting good people who supposedly have mental health problems.
    Hopefully as you get nearer a diagnosis you will be able to get some of the things you deserve like a good job. However in the time I have known you now you have a nice new place with your own touch to things so hopefully that is a sign of better things.

  2. an exceptionally intelligent, perceptive and well-written article that rings true with me. It would be a good thing if more pieces like this were ‘required reading’ for all healthcare professionals

  3. as i read your very well explained blog… I found myself getting upset– It makes me think of my journey with mental-health.. as i was sectioned to a mental institution in 2000.. at that point the doctors said i might be skitzophrenic… as this was not a defenate diagnosis,, i guess it never went down on record.. this lead to a hurrendas 13 years of toture 4 my family and myself … deciding many times we could not cope with what was going on we would often went 2 see so called (professionals)… i was told that there was no record of me having skitzophrenia and i didnt need my anti-phychotic drugs… all to end in tears again as i become extremely phychotic, violent , voices in my head e.t.c… I was again taken away in an ambulance and put in an acute ward 4 a long time…. all because it wasnt strictly diagnosed—-
    (bottom line)+++
    if the diagnosis was in place in the year 2000 it could have saved me and my family 13 years off hell !! (Now they are sure im skitz– lol)
    sorry about the spelling___ I love you x

    • Totally my point, it is not just for piece of mind that you need to know a definitive diagnosis on your health records for practical reasons like getting help and benefits. I am so glad that you did get a diagnosis in the end.

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