All my diseases have a spectrum.  There are those with mild symptoms who carry on a relatively normal life and those who are wheelchair, house or bed bound and need help with the basic tasks of everyday living.  On top of that chronic diseases can change – you can start off in one camp and end up in another.  My M.E. started off moderate, I had travel vaccinations which led to me becoming very severe, then gradually over many years I made it back to moderate again.  In respect of my EDS I had few problems, apart from my back which started hurting as a child, until I was 40.  And I had no bothersome MCAD symptoms until I was 30 and all hell didn’t break loose until I was 44.

The severe end of the spectrum of my diseases is woefully under-represented, M.E. in particular.  Severely affected people are too ill to participate in life, and the Carers of severely affected people are too exhausted from their caring duties, so you won’t see either of them represented on the boards of Charities.  Charities tend to be run by people with milder forms of diseases and their illness experience tends to reflect the way the Charity is focused.  The ME Association, for example, in the early days of my disease hardly ever mentioned severely affected people.  It’s only when Neil Riley, who is himself more severely affected, took over as Chairman that this changed.  And these days I often struggle to read the posts of EDS UK and the HMSA, with their relentless positivity and endless photos of fun runs which bears absolutely no relation to my illness experience.

Chronic illness also changes as you age and older people again aren’t well represented on the boards of Charities.  As a child and young adult being hypermobile was a positive boon.  I was unusually strong for a girl and my body was lithe and supple.  I did aerobics, I danced, I lifted weights, I cycled to work and back.  Fast forward to middle age and I literally struggle to get out of bed in a morning (more on this in my next blog post).

Health care for severely affected people is dire.  If you can’t do physiotherapy/pilates my experience has been that you’re simply left to rot – even the specialist EDS unit in London won’t accept you if you’re not up to a 2 week in-patient physio course.   Bedridden M.E. patients receive virtually no care.  There are no inpatient M.E. beds for severely affected people in the entire country and it’s not like Consultants do home visits.  So, paradoxically, the more sick you are the less health care you receive.

This is in direct contrast to other chronic diseases.  My Mum has severe and chronic heart and lung disease, but she attends a 6 monthly heart clinic and a 6 monthly lung clinic and we have specialist nurses on speed dial.  And so far my Dad’s dementia care has been excellent, with a specialist Psychiatrist and a lovely specialist nurse who we can ring with any questions or concerns.   There is no cure for either my Mum or my Dad, just as there is no cure for me – the difference is their diseases are monitored and managed while mine are simply ignored.

In my younger days I tried to change the situation.  When the Government announced the setting up of M.E. Clinics around the country I volunteered as a patient representative for the severely affected.  It was a waste of time and my input was ignored completely.  These days I simply don’t have the energy or emotional resources to even try to tackle the problem – I’m too exhausted just trying to get through the day, to eat, to bathe, to run my home and to take care of my parents.  And there you have it: the more ill you are, the less you are able to participate and the more invisible you become.



6 thoughts on “Severity

  1. Michelle

    Your situation seems do much like my own! I have the same pelvic pain including the severe pain requiring labor like breathing. I had a partial hysterectomy at age 24. Last year at age 40 they took both ovaries. I also had a rectal prolapse and vaginal vault prolapse b repair. I had no signs of the prolapses until a June. By August I had to have a Foley catheter… It had been a living hell. Even with there hysterectomy and other surgeries I am still suffering from severe pelvic pain. I am too barely able to get out of bed. I’m paying out of Porsche to see a physical therapist twice a week. I’ve yet to be diagnosed with EDS but I’m sure that is what it is. I have a million specialists that blame problems on other body systems. I am fighting to see a Dr that can diagnose v me. Some of my Drs day it’s pointless to get there diagnosis because there is nothing that can be done. I’m sorry you are in so much pain. I know exactly how you feel. I hope that you find something that helps. I am trying to get in to the Mayo clinic. I live in the West coast and the Phoenix Mayo said they don’t have the specialists I need. So I’m trying to get in to Rochester. I am going to follow your blog. Thank you for posting!


    1. Jak Post author

      Hi Michelle

      Really sorry to hear of everything you’ve gone through. I had my first EDS symptom aged 4, but wasn’t diagnosed until I was 42. Even then I had to guess I had EDS and then find my own specialist – I too paid privately to see someone as I knew just seeing a general Rheumatologist would be a waste of time.

      While it’s true there is no cure, a diagnosis is crucial! There are things which help, eg physio, bracing etc. and at least you know what kinds of things will make it worse.

      Also it has implictations for operations, eg. wound healing, higher chance of infections, the types of stitches to be used, not to use staples, and as you’ve found out the chance of prolapse etc.

      EDS people should also have more regular dental and eye checks, have a heart scan for mitral valve prolapse and have a bone density scan even if not menopausal. Of course, EDS can cause very serious bowel and gut complications too which is why a proper diagnosis is so important.

      Good luck in finding a Consultant familiar with EDS, though I appreciate that can be hard.

      Jak x


  2. Karen, The Walking Allergy

    I am having a similar experience. I finally (after 8 months…) have a port. Now, getting a pump is a challenge. ‘What program are you under?’ Yeah. There is no program for MCAS. The complex disease clinic accepts patients wth Lyme, ME, fibromyalgia and lupus. A new head has been hired there who believes that 90% of chronic illness is mental. Not that I qualify- but I think I’ll steer clear. I don’t have cancer, or cardiovascular disease. I don’t have COPD, or any one of a number of illnesses that would make me fit into one of their boxes. The hospital pharmacist doesn’t seem to be able to understand the concept that even though I’m not under a ‘program’. I still need a pump. We might have to actually refer me to palliative care just so that they can put me somewhere (why exactly that’s necessary, I’m really not sure.). Technically, palliative refers to ‘non-curative quality of life treatments’. Okay, I guess it fits….but I seriously doubt that the palliative care team has patients who are going to be there another 40 years (I’m being optimistic).
    I’ve discovered, time and again, that I have the wrong illness. The nurses at the health unit who do dressing changes, etc., are having the hardest time understanding that I’m doing this myself. No, I did not get the ‘About Ports’ pamphlet before I got there. “You should have gotten one. The cancer agency gives them to all patients before they get a port.” “I don’t have cancer. I have MCAS.” “Oh. I thought only cancer patients got ports.” I must have had that identical conversation five times that day. Their discharge instructions refer to going to the cancer agency if x y z happens, or going to the hospital if abc happens. I got about four pamphlets- after care, what to look for, etc. every single one mentioned the Cancer Agency. I felt like giving them back to the nurse and asking where the ones for patients who didn’t have cancer. There’s a funny cultural thing too, when I say “I don’t have cancer.” The universal reply is “Oh, that’s good.” Yes. It is. I’m very glad I don’t have cancer. But if I did…I would have access to volunteer driver services (instead of spending $100 on a cab to get to my weekly IV therapy). They have a hat exchange (and I need hats…but I can’t go), a wig program (not quite there yet…but soon), caregiver respite services, etc etc. Why should somebody get these services when they need them, and someone else doesn’t. It’s all based on specialty clinics or programs. And there isn’t an ‘other’ clinic. So frustrating!


    1. Jak Post author

      I understand completely Karen. How dare we not fit into a box on the computer?! And you’re spot on when you say it shouldn’t matter *what* disease you have – if you need care or health services then you should receive them. I wish the Powers That Be could experience the world from our perspective – maybe then something would change. Jak x


        1. Jak Post author

          LOL! Me and you both, only I tend not to say anything. My Mum, for example, blatantly has MCAD. She was whinging this week about her horrendously itchy scalp that drives her crazy – she’s tried everything and nothing stops the itching. I soooo wanted to tell her to stop pouring alcohol down her neck every day, which is massively high in histamine, and maybe that would help but I’d be wasting my breath. And two of my cousins have histamine problems, but neither want to hear about having to go on a low histamine diet! x

          Liked by 1 person


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