Comparisons

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?

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12 thoughts on “Comparisons

  1. Elaine Stammers

    I agree too on this subject. As ever, I guess it’s about money and influence and power. The cancer charities bring in a huge amount of donations, hence the amount of influence they have and the heart jerking adverts they can afford on TV. Cancer or fear of cancer seems to have a special place in the collective unconscious re disease so this is not easy to change. I guess it must be comparatively recent though, as other conditions used to ‘take’ people e.g. TB in the not so distant past.

    I always remember the speedy investigation I had done some 15 years ago when it was possible I had uterine cancer due to some unusual bleeding. I was pretty sure it was due to some medication I had to use for overlong while waiting for an op which had been postponed, as this was given as a side effect! Luckily I was right…….

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  2. Glo

    It’s disease marketing. The breast cancer thing makes me nuts. Other cancers and diseases aren’t as important or as likely to kill? I had my thyroid removed as cancer cells were found. Nobody much cared or did anything. Granted it wasn’t severe and I caught it early because something just didn’t seem right. The doctors said its gone now. No need to worry. Right. Then when mcad finally diagnosed again no real support. No one believes in it. We just need better marketing for chronic diseases. Wait until a tv or movie star is diagnosed. Then we might see something done about these things.

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  3. Sarah

    2 years ago I was diagnosed with cancer. During the appointment they even bought in a health care assistant as I was on my own. I am a frequent flier at the hospital so there was no reason to have someone there. They thought I was going to cry, but I didn’t. To me it was just yet another something that was wrong with me. But as Elaine said, the treatment of me as a person was totally different. I felt that they could actually see me. They listened to me, they empathised with me
    My friend said a good way of describing how we are is like we are going through chemotherapy. Bedridden, exhausted, throwing up and severe fatigue. The problem is if you use that analogy, people might tut. Oh well

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  4. Catherine

    Thank you, brilliantly put. Its absurd how careless everyone seems to be around our terrifying daily suffering.
    I had biopsies recently which mostly was considered to be cancerous. I knew it wasnt. No one heard me stating v clearly that unfortunately if it had been I would have had some attention and care.
    ” thank goodness, its nothing sinister, your clear”. Came the frankly maddening medical response.
    I very sarcastically retorted
    “Well no nothing else but cancer is considered to be sinister. Perhaps its a good thing that none of you have a clue and dont read the research papers. What we live with relentlessly would be far too shocking for you to handle. There clearly is NOTHING CLEAR about bleeding, a black mass with now more holes in me. My clever body is giving you more information that no one takes the time to intelligently put together”.
    I was furious ! Our lives are so often a non stop journey in hell and isolation which has none of the, frankly, glamour and care that cancer gets. Having had three different types also it was the only time I actually got attention !
    If the biopsies had been cancerous I would have got some .
    Insane systems out there do not catch , hold or care about the complications we live with.

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  5. Karen, The Walking Allergy

    ARrgghhhh! I’m there with you! Humans have no way to deal with people who are this sick for this long. Seems that the magic number is five years. It’s like our brains can’t think past that- if you’ve had it for five years, it can’t be THAT bad…

    Suffering contests are a recipe for disaster. My suffering is immense, but so are my gifts. I cannot understand another’s suffering, nor can they understand mine. All we can do is honour each other’s suffering. I do my best to avoid playing the suffering game now. I don’t WANT to win that particular contest.

    And if another doctor says ‘There’s an x service/program/support for cancer patients…but oh, you don’t qualify.’, my head might explode… I’m sorry I have the wrong illness- can I fake cancer so that I can get that thing I need really badly, but that is based on diagnosis rather than need!? (Such as volunteer drivers to medical appointments- I’ve spent a fortune on taxis- and I react all the time in them!) I have to say that it is one of my pet peeves (second only to doctors who tell me that what I’m describing is impossible…).

    I have to admit that the first time I saw a ‘Fuck Cancer’ t-shirt, I interpreted it differently than I think they intended. 🤔

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    1. Jak Post author

      LOL love the last paragraph Karen 😉 And you know I’m with you 100% on the “your reaction isn’t possible” comment – try telling our bodies that! x

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