Blimey, I seem to have a lot to say this week! I blame my hormones, I’m feeling quite arsey 😉
I read an article on The Mighty about comparing all illnesses to cancer which really resonated with me. Chronic illnesses are trivialized in general and M.E. is near the bottom of the chronic illness food chain. It’s not seen as a ‘real’ disease to start with and certainly not one which deserves a huge amount of empathy or understanding.
I’ve lost count of the number of times my tests have come back normal and some well meaning medic has said to me “good news, there’s nothing sinister”. In other words, there’s no cancer. Which, don’t get me wrong, is wonderful but I’m still left being unable to eat, or passing out, or in agonizing pain with no explanation and consequently no treatment. For 20 years.
One of the most hurtful things my Mum has ever said to me is about her sister, who sadly died of ovarian cancer. “Your poor Auntie, I’ve never seen anyone suffer the way she did for those two years.” Er, what about your daughter who spent ten years in bed having seizures, unable to eat anything solid for a whole year, unable to speak for a whole year, whose hair fell out and has not grown back, who was terrified, isolated, in dreadful pain, unable to sleep, whose feet turned in so she was unable to walk, whose hands turned in so she couldn’t even pick up a cup………..the list could go on and on. And who now faces a future of chronic pain, increasing disability and the daily threat of anaphylactic shock. My Aunt had a loving husband, three loving children and partners, a Macmillan Nurse, a fabulous GP, attended a support group for cancer patients every week and was hospitalized when needed. Not left in a bed alone for a decade without care of any kind. She was 76 years old, with a full life behind her, family, memories…….not 26 with her whole life ahead of her. She did pass away but she’d lived first.
My cousin’s husband is sixty and two years ago was diagnosed with chronic leukaemia, a disease you can live with for many years and which often doesn’t even need treatment. He is receiving excellent care, has three monthly checkups and every time anyone meets his wife they ask after him and offer help and support. No-one even asks after me any more. My Mum regularly sees my cousin and knows all about her husband’s treatment, yet when we speak she’s totally lost interest in how I’m feeling. Well, it has been 23 years so I’d imagine it gets a bit boring listening to me reel off which part of my body is hurting today.
I’m not comparing the two diseases, simply pointing out the different way cancer is treated by both medical staff and the public compared to a chronic illness. It’s like we should be glad our disease hasn’t killed us (even though both my M.E. and MCAD have had a bloody good go) and of course I am, but that doesn’t negate the lifetime of suffering I’ve gone through. I’ve had back pain for 40 years now and when you’re allergic to painkillers and can take nothing to give yourself a break trust me when I say it really gets you down, especially on top of the thirty odd other symptoms I also have.
From the get go I’ve been told I should be “glad it’s not cancer” but I’m not sure why I should be glad to have illnesses that have made me spend half my adult life in bed too exhausted to feed myself, have robbed me of a husband and children, holidays, fun, employment, money, sleep, food, the ability to walk or even sit up some days, pain so severe I want to take a knife to my body parts, nausea, retching so severe I’ve damaged my oesophagus, my ability to read, speak or write like I once did and all the things which really make us who we are and our lives meaningful. Since when did that become trivial or irrelevant?
There are excellent provisions for people with cancer. Specialist hospitals, nurses, and clinics and if you have cancer you can get to see a GP the same day – they might even come to see you. Yet there is nothing for M.E., EDS or MCAD in the whole of the north of England. Not a specialist Consultant, not a specialist Clinic, not specialist Nurses or specialist Physios and if I want to see my GP it takes me 6-8 weeks. I receive no care whatsoever. And it’s not right. It’s not right to make one disease more important than any other. It’s not right to say that one person’s suffering is worse than another person’s suffering. It’s not right to treat one person’s pain and ignore another person’s pain. It’s not right to recognize the emotional impact one disease has on a person and ignore the emotional impact another disease has on a person.
You can’t compare diseases. Is Cancer worse than Parkinson’s? Is Parkinson’s worse than ALS? Is ALS worse than Schizophrenia? Is Schizophrenia worse than Cystic Fibrosis? Where is the line? How is one disease compassion and treatment worthy and another not? Is the possibility of death the only reason to treat disease? What happened to easing pain and distress or do we not have the money for that? What price suffering?