My parents and I were chatting yesterday. Mum had seen an item on the TV about Sepsis and talked about the fact that her Sister died of that while having treatment for cancer. I said to Mum “you realize that in Meningitis it’s the sepsis that kills you not so much the Meningitis?” and Mum said she hadn’t realized that. So she turns to my Dad and says “your sister had Meningitis, it’s lucky she didn’t get Sepsis” and I sat there with my gob open. Er, your daughter had Meningitis, nearly died and is sitting right here FFS!
My Mum is a very compassionate person and has a lot of empathy for other people’s suffering – just not mine. Her other sister battled cancer for 2 years and my Mum frequently tells me “I’ve never seen anyone as ill as she was, she suffered terribly” and I sit there internally shaking my head. My Aunt was 78 years old, had had a full life, had a loving husband, 3 wonderful, supportive, caring children, a GP who used to visit her weekly at home, the Council paid for her bathroom to be turned into a wet room even though she was fucking loaded, she had a specialist cancer nurse and Consultant, went to a weekly cancer support group and in the end was visited by MacMillan 24/7. I’m not denying having cancer is rough but she had exemplary care and support. After my Meningitis I was bedridden for a decade. I suffered every second of every day of every year. I was only 26, lived alone, doctors refused to visit me at home even though I was too sick to get to the surgery, I had very little symptom relief, never saw a consultant, was denied welfare benefits to pay for my own care, was denied care from social services and ignored by every-fucking-one. I had daily seizures, frightening anaphylaxis for which I received no treatment, paralysis, spent periods unable to talk, walk, eat or even remain conscious and was told twice I might die. But my Mum never mentions it. Never.
It’s not like she denies that I’m sick and if something about M.E. appears on the telly or in the newspaper she will ring and tell me, it’s more that she just ignores my suffering. I’ve been diagnosed with EDS for 8 years now and she still refuses to remember the name of the disease like it’s just too hard to remember three simple letters – she calls it “that thing that you have” if she mentions it at all. The MCAD is ignored completely even though it too nearly killed me.
My whole family simply ignore the fact that I’m chronically ill. They don’t ever ask how I am or how I’m managing. When I meet friends in the street they always ask how my parents are, hell they even ask how my dog is, and never ask how I am. It baffles me.
I know I’m not alone in that. My best mate’s M.E. is ignored by her family too and they can get narky with her if she doesn’t attend family events, even when they’re a 2 hour drive away, like she’s being deliberately anti-social. When they come up north to visit her, instead of staying in a hotel or B&B or taking her out for a meal they expect to stay at her home and for her to look after them – no accommodation is made for her illness whatsoever.
My Mum made a remark the other day which I also found weird. She said “when you and your best mate meet up is illness all you talk about?” and I didn’t know how to respond. It probably makes up half the conversation but isn’t that normal? Our diseases dominate our lives and dictate how we live every second of the day, and when our families ignore that it’s bloody brilliant to have each other to talk to about it! My Mum should be pleased I have that support cos I damned well don’t get it off her.
I have no clue what all this denial is about. I’m sure it’s really tough watching your child suffer but I’m not sure how ignoring it is supposed to help the child. Thank God for my ill friends as they are the only people who understand what life with chronic disease is like and the daily torment of being this relentlessly sick.