I will preface this rather deep and dark post by saying I am OK, I will be OK and even if I am not OK I have many strategies, supporters, friends and a black cat which will all work together for good.
I was coming home from work this evening and I was in the epicentre of a sort of cyclone of death. Thanks to my schizophrenia I had been hearing colleagues discuss my demise all day and when I was walking home from the bus stop in the dark, I had an entourage of ghosts. There was The Grim Reaper (and for some reason his children) and I could feel everything combining to end my life. The culmination of a lifetime of terrors seem to have been stalking me recently. There is a reason for this.
A few months ago I noticed some concerning gastroenterological symptoms. I knew I should talk to my GP but didn’t. This is not like Jeanette at all. Jeanette – at least the sensible, public-facing Jeanette who gets up on sage and writes positive and encouraging articles – will always advise people to consult a doctor when concerned about health issues, take medication as prescribed, exercise and eat well and all those sorts of things. My mum was a radiographer before she retired and her specialty was mammograms. She would tell me that some women will know they have a lump in their breast for years before they seek help, too worried about how to deal with bad news to seek assistance. I used to think how silly these women were. If you had a health concern, surely the logical course of acton would be to address it so that you can catch anything nasty early and stop worrying if you don’t need to worry? Sadly I wasn’t listening to my own advice. I was dancing to the tune of the denial waltz.
The health concerns continued for months and still I did nothing. I didn’t even bother thinking of excuses to go to the doctor, I simply didn’t do it. I made and then cancelled an appointment figuring I wasn’t ready for any stressful experiences at that point in time. A couple of weeks ago I was in so much pain I needed to leave work quickly. For the first time in my life I didn’t know if I would get home or not. Still not wanting to make a fuss, I didn’t go to hospital or my GP. I just struggled home on the bus in agony. This experience told me I needed to do something about my health concerns. Because I had kept my worries a secret and not told anyone, I found it very hard to pluck up the courage to share my concerns with another human. First of all I confided in Mr Kitty. I cuddled him and he said purr. I figured he would want me to do the right thing, given that, aside form cat food, I am his favourite thing in the universe. I then called my confidante and coauthor Emma but she didn’t pick up her phone so I left a message. But I knew I needed to let the secret out or I could never get assistance. I called Lifeline, which is a go to service for me when I am struggling with mental health issues. The young man I spoke to was wonderful. I promised him I would make an appointment to see my GP. After telling him I was able to tell other people my concerns. I booked an appointment with my GP, thinking she would give me some fibre supplements or something.
My GP appointment was on Monday of this week. When I described my symptoms my GP said straight away ‘you need a colonoscopy. Make an appointment – you won’t need to see the specialist. And I’ll send you for a gastroscopy too.’ She then asked me about my family history – grandfather bowel cancer – died, uncle – stomach cancer – died. Father – atypical abdominal tumour – still with us thank heavens! (I love may dad lots ad don’t want him to die ever if I have any say in it!). She wrote all this down and looked concerned. For the first time I actually felt genuinely concerned myself. I made an appointment to see the specialist and that will be on Friday 15 July. I have never been scared around illness and disease – at least none of the illnesses which affect other parts of my body than my brain. When I told people at work and friends they all said ‘it’s nothing to worry about. you will be fine.’ I thanked them and said ‘me too!’ with a false smile. Actually I am terrified.
I told myself I would not get stressed and have managed to do that quite well. It’s not that I have no stress I just think I am able to cope with it by pretending it isn’t there. I become aware of the stress I am under when an angry outburst at the cat happens for no particular reason or when someone says something on social media I don’t like and instead of my usual eye roll I yell out obscenities. I decided not to visit ‘Dr Google’ but stupidly relented yesterday. I found myself hunched over my laptop crying.
For an Autistic person and a schizophrenic one hospitals and physical health stuff is particularly daunting. Even if I have a not so life threatening illness I am concerned about procedures and having to spend time in hospital. I hate hospitals but I have spent many months and possibly years of my life within their sterile and disempowering walls. When doctors and nurses see patient Jeanette all they have to go on is those diagnostic labels on my chart. There is never a diagnosis of Amazing Author or even Volunteer of the Year. Having Autism and schizophrenia as the only things to define me can be problematic.
The limbo of waiting is horrendous too. I try not to think about any outcomes of the investigations but I invariably find myself at one of two extremes, the only options I can seem to imagine – ‘Jeanette has three months to live so she had better cram in as many conferences and articles as her sick little self can manage’ – and ‘There is nothing wrong with Jeanette. She can continue making a difference and sign awesome without any horrible heath conditions or smelly ostomies….’
I still manage to go to work and I am still helping others and fitting in my full workload but I am in a sort of misty grey realm of not knowing and worry which is just about destroying me whenever I stop to think about it.
So I suppose the moral of the story is go to see your GP when you are worried about your health at the time the worry occurs, not several moths later. And Jeanette is scared and she is doing her best to be positive and OK. Mr Kitty is having lots of cuddles and maybe the world needs a book about accessing health services for Autistic people and maybe I can use my experience – whatever it turns out to be – to inform such a work?