The joys of having an invisible disability

I have Manic Depression which also goes under the less descriptive but more popular name of Bipolar Disorder. This illness encroaches on my life to a lesser or greater degree every day but it never leaves me alone. In over 40 years I have had one period of remission which lasted 8 glorious weeks, nowadays I’m lucky if I get two reasonable days out of any seven.

I haven’t done any work other than voluntary work for over a decade and for that time I’ve been in receipt of state benefits including Disability Living Allowance (DLA). I get DLA because I’m considered a danger to myself because, when stressed (and this is good stress as well as bad stress) I become suicidal and self harm.

I’ve recently been through the Work Capability Assessment (WCA) for Employment Support Allowance (ESA) and was put into the support group without an assessment by a health care professional. As somebody with a mental health problem this makes me part of a minority within a minority. I believe my GP played a big part in this when he wrote the letter supporting my claim. It was hard to read that I was considered a very real suicide risk should I be forced back to work. Sometimes it’s too hard to know the truth about yourself. He describes me as a “peeled baby”; in public I wear an armour of outward competence but when I remove that in a safe place or with safe people I’m as vulnerable as a baby without skin. It’s exactly how I feel which is why I lead a hermit like existent, of the world but often not in it.

I cannot lead what is remotely considered to be a normal life. To anybody who sees me I show a front of happiness & have a zest for life which quite often doesn’t exist in reality. Some days it’s really hard being me. It’s really hard forgetting to do things despite the reminders I have dotted around my home, some days my memory is so bad that I don’t know where I’ve been until I look at the photos I’ve taken that day. I forget to eat and to keep myself as clean and as tidy as I like. My number one task on my To Do list tomorrow is to take a bath. When was the last time that appeared on your To Do list?

The people I am fondest of most are the people I keep at arms length. My current partner lives and works in West Sussex. Some days that’s too far away but mostly it’s far too close. My health & welfare and finances are registered under Lasting Power of Attorney and too often I have to call the friends who act as attorney to ask them to take hold of the reins because I just can’t cope otherwise. It’s a difficult life though not without joy but it’s a disabling life, I can’t do all I want to do and never will. It’s not my age or my physical health that holds me back it’s my mind.

I’m not a bad person, I don’t break the law and I try to do good within my community but, in spite of this, I am often reported for benefit fraud and cat called by neighbours for being a drain on society. I worked long and hard hours in all the jobs I’ve held and paid lots of money in taxes and National Insurance (NI). I’m not taking anything back that I haven’t first paid in but if you can’t see what’s wrong with me then I must be swinging the lead as far as I jolly well can.

I have a bus pass that I have to fight tooth and nail for but, because I sometimes run for the bus, I find myself at the end of biting comments. If you can’t see my disability how can I possibly have one let alone need a bus pass?

If I use the disabled toilet (not the ones that you need a key to unlock them) then there is always one person who will tut and mutter theatrically under their breath about my lack of disability and usually before they sneak in to use the facilities themselves. Disabled people don’t judge me by my appearance. Most disabled people know that if you can’t see my disability then it doesn’t mean that I don’t have one.

I get angry at these negative attitudes. At times I get so angry I verbalise my distaste at the people passing judgement which in turn can actually trigger a manic episode. I’m often at the end of cutting and nasty comments by those who claim to have personal experience of mental health problems. One person told me that there wasn’t a down day in the world that couldn’t be improved by baking a cake. Try telling me that when gravity pulls me into the sofa and refuses to let me stand up for hours at a time.

One mental health nurse told me I couldn’t be suicidal because I could verbalise my anguish. Another mental health nurse told me that carrying on seeing him was pointless because I was well versed in my illness. You see don’t you that I’m not disabled because I don’t look it?

When I went through the WCA process I was denied help by all the organisations I reached out to for lots of reasons. One mental health charity told me that they didn’t help people, another organisation said they don’t make allowance for disabled people unless they are in wheelchairs and a third told me that they thought an hours journey across the city which would be two buses either way would be reasonable for somebody without a physical disability because, of course, if you can’t see a disability then it doesn’t exist. Level the playing field all you like but if I can’t get on to it to use it then it’s useless.

I get angry at the pure nastiness, incandescent with rage and the pure thoughtlessness and despair at the discrimination bandied around by those who are supposed to help. Raising awareness of mental illness is important but then so is education about mental illness and the debilitating effect it has on those of us who have them.

I have an invisible disability but I am not invisible, I won’t be ignored and I won’t let you bully me. Get used to those of us with invisible disabilities, like it or not, we’re here to stay.

3 thoughts on “The joys of having an invisible disability

  1. THANK YOU. For your honesty, your understanding and your generosity in sharing.

    I, too, have an invisible disability. I have relapsing remitting Multiple Sclerosis. Like you, I’ve been sneered at for using the disabled loos but, believe me, if I have to go, I HAVE to go! I’ve been told “oh, but you look so WELL!” Yes, but you have NO idea how much effort that requires. Frankly, I’ve got to the point where I don’t care. If people want to be small minded, let them. I’ve also practised the art of self-neglect. I have insecure ambivalent attachment issues so I have very little sense of self-worth and I push myself to the limits and then I’m ill. I’m trying to learn not to but when this has been your life, it’s hard.

    I hope and pray you have more good days than bad ones. X

  2. Thanks for taking the time to share and I too hope you have more good days than bad days. x

  3. I never, ever fail to admire you, your life, and what you write. You are a true inspiration x

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