When you visited my home I answered the door to you myself because there was no one else. Had I not been expecting you, I would not have got up and walked very painfully, albeit without apparent struggle, to let you in.
You spotted the piano as you came into my sitting room and commented on it; I told you I hadn’t touched it since coming out of remission as I have brain fog and no motivation. I wish I had encouraged you to run your hand over the dusty keys, then you might not have used my owning a piano as evidence of my rich inner life (am I supposed to sell all implements of pleasure now I’m sick?).
You also mentioned the books. I told you they were kept out of sentimentality as I have not been able to concentrate on a book since my last operation five years ago. Again, you went away and wrote that I am clearly mentally well as there is evidence that I read.
I have a bicycle, cross trainer and a boyfriend too. I am physically unable to take advantage of any of them so it’s a good job you didn’t spot them all lurking in the shed.
I have always been brilliant at passing tests so counting back from 100 in sevens was easy-peasy. According to your system this is a much better test for cognitive problems and brain fog than the fact that I took two Tramadol four hourly the other day instead of Loperamide, persistently forget my thyroid meds, often forget conversations almost as soon as I’ve had them and cannot remember what I’ve read as soon as I have finished reading a short paragraph.
I told you that I cannot stand for long enough to prepare and cook a meal. On my frequent bad days I can’t even stand to stir food in a saucepan. Were you trained to persist, terrier-like, at the idea of me preparing baked beans on toast being some kind of life saver?
I told you three times I cannot lift the grill for toast, cannot stand to stir the beans and most importantly, even if I could my compromised digestive system cannot cope with bread or legumes. Eventually I sort of acquiesced as you had worn me down and I think I said “if you say so”. I call that bullying.
You witnessed me bending, moving and even rushing to the toilet. This was all evidence, in your eyes, that I do not need extra help. The bending, twisting and other movement was to try to deal with pain – I hadn’t taken any Tramadol as I wanted to be clear-headed for our interview. The rushing was because I wasn’t willing to have an accident in front of you. Perhaps I should have pooped in the sitting room before your very eyes as proof of my need.
When I told you I could, if I absolutely had to, walk a little but I might need a nappy and would need a sit down every ten minutes I did not expect you to suggest that I carry out my life in this way. Do I carry a chair with me everywhere when I struggle to carry my handbag, which only contains keys, phone and an empty purse? Is it right and dignified to expect me to wear bowel incontinence aids when I am sobbing and trembling at the very thought?
I told you that I only really feel safe at home. My GP says I have PTSD in addition to all the physical conditions listed on my application. This, I was not even questioned on. In your decision it states I showed no signs of anxiety. I was at home. Where I feel safe. Duh.
After you left I sat in the toilet for an hour and bled from my bottom, in agony and cried. I then physically crawled to my bed. It was two in the afternoon, I stayed there until the following day and slept for most of it. You hadn’t even asked about the fatigue.
In conclusion, I am very grateful that I have friends and family around me who can help with shopping, cleaning, dog-walking, getting me to hospital appointments and my sometimes expensive dietary requirements . Your and your employer’s lack of understanding and support has at least highlighted that. I am very concerned about those who are or who feel more isolated by their chronic disease.
Tig Savage (pictured).
PS, My boyfriend wasn’t really hiding in the shed.
The author of this letter suffers from a complex auto-immune disease incorporating Hashimoto’s, hypothyroidism, Ulcerative Colitis, bouts of Ileitis, Iritis/Uveitis and possibly arthritis.