The diagnosis is on dodgy ground, after seeing psychiatrists since 1998 and finally getting my medical records released, only to discover how vague my file is and with no indication of how my diagnosis was arrived at. I disagree with the diagnosis I have which is why I won’t reveal what it is or what I think I have till I’ve had my second opinion and review on my diagnosis. However I can still talk about what it is like to live with a mental illness, the symptoms I suffer from and the stigma I have to endure day in and day out.
We all know a ‘crazy person’ right? The cat lady down the street? The troubled son or the crazy sister? Well…that’s me! I’m the crazy lady on my street, the oddball, the troubled daughter, delicate or vulnerable, over sensitive. I’m the one people would rather hide away and pretend she didn’t exist. The one they’d like to keep quiet and pretend there was nothing wrong with me. With a smile on my face and head held high, to walk through the streets pretending I ‘fit in’.
The truth is I can’t do that, I’m not like ‘most people’. I can’t function like other people, going about each day as though all is right in the world, go to work, come home and look after the house, have guests round and host dinner parties or go out to functions. In fact it would be next to impossible for me to even hold down a stable job. Why? because my mind is unpredictable, my illness is unpredictable. Even the best medication and treatments in the world can’t ‘fix’ me.
I can be seemingly stable for days, weeks or even months but one day without warning that can all go to pot. I can wake up one morning feeling as though I am in a different world, like overnight my body warped through the mirror to the other side and everything is backwards. I can suddenly feel as though I am a god or a devil or that I’m possessed or am god’s messenger. I can think everyone is out to get me, watching me, waiting for me, even my loved ones are in on it. I might think you are a vampire that can read my mind or that my own child is an alien that wants to kill me. Can you imagine being able to hold down a job with thoughts like that? With nerve wracking fear of those around you, even those closest to you?
And even my version of stable would differ greatly with yours. My version of stable is being able to stay at home not living in fear or having hallucinations or hearing voices. My version of stable may well involve crying myself to sleep every night (because at least I’m not seeing or hearing things that aren’t there). My version of stable might be being able to get out of bed every morning for a week without returning to bed within half an hour. Things that if you yourself suffered from you’d think something was seriously wrong, but for me is ‘normal’ and considerably better than what it could be like.
Outside of being delusional, I have to work hard to stay at a level I consider stable. I have to take my medication every day, I have to minimise stress around myself, I have to avoid triggers or people who have drama follow them everywhere. I can’t have ‘drama’ in my life. I have to have noise levels at a minimum, avoid too much stimulation, avoid too much television or computer time (the lights and electricity charge can trigger me). I have to avoid bad news in the papers or movies about delicate subjects. In fact just about anything could potentially trigger an episode in me. So I have to keep my life as ‘boring’ as possible. I have to try to make sure I eat healthily, drink plenty of water, get the right amount of vitamins, not too much sugar or additives in my diet. I have to try to get fresh air every day and avoid busy places.
For all my hard work and daily struggles I’m rewarded with being refused therapy because there is not enough funding or resources in the NHS mental health care trust. I’m rewarded with being the outcast who nobody wants to know, the one the family condemn as an outsider to be kept at arms length. The one people are ashamed of and don’t want to be seen with. I’m told how it’s all in my head, I just have to change my way of thinking, think more positively. I tell you now that no amount of positive thinking will keep those demons away that I see crawl across my bedroom floor in the shadows!
Stephen Fry said that having bipolar (his diagnosis) is like the weather, it is an outside force you can’t control. You can look for the warning signs of an oncoming storm, the grey clouds etc….but you can’t stop it raining. You can prepare yourself by putting on a coat and hat, wrapping up warm and dry or go out in it as you are, unprepared and get wet and cold and feel sorry for yourself.
I’m not going to be in denial about the weather being out of my control or about an oncoming storm, it might not be a nice thing to face but denial isn’t going to help me any. Just like the weather, my mental illness is not in my control, it is an outside force, I can look for the warning signs of an oncoming episode and prepare myself as best I can. I can call the doctors and ask them to assess my medication, make adjustments if necessary. I can warn my loved ones so they can be supportive and understanding of me. I can minimise any added stress in my life currently and focus on self care, take hot baths, play relaxing music, get earlier nights in bed. All these things might just minimise the impact my illness has on me during an episode.
The problem is that there are different mind sets from normal people about mental illness. Some think that mental illness is the latest ‘fad’ that’s all in your mind. They don’t realise that it doesn’t feel ‘cool’ for someone who is living with mental health issues, or how hard it is every day to get by even when not suffering from an actual episode. They think it’s about getting attention, when in fact most of us that do suffer from mental illness get a lot less attention than the average person because we live mostly in isolation with people ashamed of us! Or, as I started this blog, they think of us as the ‘crazy person’ on their estate or in the family, the one they want to hide away or pretend the illness doesn’t exist.
None of these approaches helps us and only makes it worse, forcing us to hide our problems and live in shame, cowering away too scared to reach out to anyone for help, to scared to speak out about what we go through. We need more public awareness, we need people to truly understand the devastating affects these illnesses have on ourselves AND our families and friends that stick by us. Because mental illness doesn’t just affect the sufferer, mental illness affects everyone in the proximity of the sufferer, they live with mental illness too!