Sunday, 5 February 2012

Schizophrenia and Disability Benefits

A hundred pounds a week in perpetuity in exchange for a label of perpetual lunacy.

I have just been reading about disability benefits on a blog written by a psychiatrist who seems rather thoughtful and understanding.  This is a subject that obviously stirs up interest - there were a lot of comments to read through at the end of the post.

Here's the link:

It is an American blog, and obviously the medical system is rather different over there.  Being on disability benefits does not just mean you get money from the state - it also entitles you to medical care if things go wrong, something you would only usually get if you paid private healthcare insurance.  We still have the NHS, bless it, although I know for a fact that if I had been treated in a private hospital, with proper care, I would have recovered a lot better from my first breakdown, and maybe not gone on to have further breakdowns.  Don't ask me how I know - I just instinctively do.  There are some things money can buy.  Like dignity.

Anyway, the psychiatrist made a valid point, that people who consider themselves disabled put themselves at a disadvantage, and he is right.  He was writing about his patient, who was improving and yet who surprised him by putting in a claim for disability benefit, which he was expected to endorse.  He was reluctant to do so.  He would rather have seen his patient get better and return to work. 

I was surprised that the post generated so much discussion.  Duane Sherry (a great writer, see his site Discover and Recover) jumped in to say that the psychiatric drugs themselves disable people (which is true).  Other people made other valid points.  But I agree that yes, the disability system is messed up.

I should not really have been on benefits for all these years.  But, with the diagnosis of schizophrenia that I had been given, I had no choice.  Even though I recognised that I was better than I had been told I would ever be (not on medication, no symptoms, didn't seem to be deteriorating twelve years after my last breakdown) I knew I was not equipped for the workplace.  Because nobody was about to take that diagnosis away and nobody would employ me with it.  And also because I had no confidence that I could cope in the workplace, because I had been told that I was a schizophrenic and I believed it.

I had accepted my limitations.  It never occured to me to challenge the diagnosis.  I quite liked getting the disability benefit - it stopped me worrying so much about money.  It paid for the kids' piano lessons, and shoes, and outings to theme parks.  I kept very quiet about it though - after all, if people found out I was on benefits, I could hardly explain why - I was never in a million years going to voluntarily tell anyone that I had a diagnosis of schizophrenia.  What was I, mad?

Finally, I have found a way out of this paradox.  I have made a little money from writing - not a fortune, but enough to encourage me to believe that from now on I can support myself and leave the disability benefit behind.  And what a relief that is!  The guilt I have felt for all these years has been overwhelming.  I have often spoken to friends who had to juggle childcare with work, and sympathised with them, while knowing I had a secret income which would have greatly altered their attitude towards me.

Our family is not well off, but we are hardly paupers.  I was caught in a trap - without the benefits I would have had to work.  I couldn't face the kids not having the piano lessons or the trips to theme parks.  I would have found it close to impossible to get a job.  I got stressed just thinking about it.  So I stayed on the benefits.

The last time I had a medical assessment was almost five years ago.  I was pregnant with my youngest.  I went into the office and started to speak to the doctor.  I told him I would like to be well enough to work one day.  He said perhaps, when I was much older, I would be able to do a very low key job.  I broke down in tears.  He curtailed the interview, said that it was not good for me to be so upset when I was pregnant and that I should go home and he would fill out the rest of the forms on my behalf and recommend that the benefits continue.

I came home and told Paul what had happened, how I had cried in the doctor's office and how humiliated I had felt.  And do you know what my husband did?  He told the children and I to put our coats on and get in the car.  He drove us to Tesco and then and there he bought me the first laptop computer I had ever owned.  I was too astonished to even be properly grateful.  My husband was usually so careful with money.  But he told me he knew something about me that I hadn't yet properly recognised about myself.  He realised that I had a vocation.

Recently I have learned to stop worrying so much, and I can see that all my past worries about money were not a healthy way to occupy my mind.  I don't blame myself for being like that - I have been very hard up in my time, and because I have been so nervous and anxious all my life almost all of my jobs have been menial ones, waitressing, cleaning and so on.  So I never earned enough to pull myself out of the poverty trap - I had no self worth, and no self belief, as I have said.  It was a vicious circle. 

Now that I am married though, things have changed, and I have changed too.  My family has given me security, and time has healed, and my writing has given me confidence, and...things just go on getting better.  If we have to do without the piano lessons and the theme parks for a while, that is fine.  I would rather have the dignity of work.

My shame about being on benefits has been tied up with my shame about the diagnosis of schizophrenia.  I could see no way out of the trap, so I made the best of what I got - a hundred pounds a week in perpetuity in exchange for accepting a label of perpetual lunacy. 

Now I reject the diagnosis, I reject the notion of my disability, and I am free to make my way in the world.  I am very lucky though, to be able to make a living out of my writing (or to try my utmost to do so, and thoroughly enjoy the trying, and not care if I don't earn much because we are not going to starve after all) because if I was to fill out an application form for a job tomorrow I would be in an awkward position.

Would I lie about my mental health?  How would I cover up all the gaps on my CV, gloss over the fact that although I have a law degree the best job I have ever held was as a customer service adviser in a call centre?  (And I only got that job by - guess what - lying on the medical section of the application form.  On the advice of my friend from University who worked as a solicitor.  'Lie' she urged, 'Or you will never get a job'.  And I lied, probably the only time in my life I have ever knowingly deceived anybody, and I hated having to do so.)

Oh, life.  Life.


  1. This is a wonderful post, and I think I've said it before, Paul is an absolute gem. That doctor was a patronizing idiot.

  2. Right on both counts, Rossa.

    By the way, do you mind if I pick your brains? Paul helped me to do some work on the layout of this blog last night, as you can see. But we couldn't figure out how to get comments to show at the bottom of the post, without people needing to click on them. We put them at the top instead, which I don't think is an improvement. Do you know how I can get them to show? If not, never mind, I have some more work to do on sorting the blog anyway, and at least I have now made a start.

    Louise x

  3. The Social Security Administration (SSA) uses a five-step evaluation of relevant issues to determine if a person is disabled. These steps involve asking if a person is currently working, if the disability is a severe impairment, if the impairment meets or equals one “listed” by the SSA, if the person can perform his or her last relevant job and if there is any other work the person can perform. While it is certainly inspiring to read that you have overcome your own disability diagnosis to find work, our hearts go out to those who cannot find work and struggle to have their disability recognized by the SSA.

  4. Yes, I am well aware of the tragedy. I have a friend who is quite traumatised at the thought of losing her benefits (although I don't think she will, she is on a fortnightly depot injection and is in quite a bad way). It has made her mental health worse.
    I remember being told by a GP shortly after I came out of hospital, that I should get a job - I may have appeared to her to be well enough to work, but I was totally incapable of doing so.
    In fact, until very recently I was still so low in confidence myself that I am sure I could not have coped in the workplace - I am still not convinced that I will flourish 'out there'.
    I don't think anyone would be on benefits if they thought they could work - being on benefits puts you at the bottom of the social pile. However, work can give meaning to a person's life, as and when that person is able and willing to give it a go.

  5. Oh, and it has been worrying me that I agreed with Rossa that the DSS doctor was patronising. He actually helped me to get the end result that I needed at the time - the continuation of the benefits - his heart was in the right place. He just didn't believe I was capable of more - in other words, his expectations of me were as low as my own.