As most of you know, I turn 50 shortly and while that’s not exactly old it’s not exactly young either. In the decade since my 40th birthday my joints have starting subluxing, I’ve developed stiffness so severe at times I can’t even walk to the loo, my back pain is so bad it both scares me and stops me sleeping, and my previously unknown MCAD has reared its ugly head, to the point where at one stage I actually thought I would die from multiple anaphylactic events every day. Make no mistake, getting older when you’re already chronically ill sucks.
I have the utmost respect for anyone who works for a charity having done it myself for many years, and know I owe a huge debt of gratitude to all the wonderful people working for EDS and M.E. organizations, however I do have a bit of a beef with them and it’s this: all their information is aimed at either kids or young adults (and by young I mean pre-menopausal). Their magazines are full of young folks doing sports, fundraising by whatever means possible and generally being positive and not letting their disease beat them. Which is great. But speak to them again in 20 years time and they might be telling a very different tale.
Did you know there is not a single piece of research that’s been carried out on older people with either EDS or M.E.? There is loads of info on possible complications in pregnancy yet not a thing on the Menopause, despite the fact that not all women will have babies yet all women will go through The Change! I find this utterly shocking, particularly in the case of EDS where patient forums show that many women aren’t diagnosed until their forties because that’s when their symptoms seem to go nuts (as did mine). Consequently there are no information leaflets from the charities on what to expect as we age, which is actually quite discriminatory. I should really sue, if I could find a solicitor to take the case 😀
Due to an absolute lack of information on aging with my diseases I have no idea what to expect. Even healthy women can struggle with joint pain, exhaustion, dizziness and stiffness at Menopause so when I have these symptoms I don’t know if they’re normal or part of my hEDS. I don’t know if they’ll pass or if I should be concerned and ask to see a Rheumy. I don’t know if I have a greater chance of wear and tear arthritis, though I assume I must have. I have no clue if the extra exhaustion I feel is part of my waning hormones or whether age is negatively affecting my M.E. Will my decades of inactivity adversely affect my heart and, if so, why is that not being monitored? Am I more, or less, likely to have a stroke? What’s the deal on osteoporosis? Skin thins with age, so will mine be worse as a result of having hEDS? Am I more likely to bruise as my veins, skin and capillaries weaken? And 200 other questions I don’t know the answers to.
Health in general seems to be all about either children or pregnant women. No-one seems to give much of a stuff about issues which affect the middle aged. It’s almost like we don’t exist, and it’s not until we’re in our seventies and at risk of old age diseases like Alzheimers that the medical profession starts to give a stuff again (my Dad’s dementia care, for example, has been excellent yet I’ve never once had my memory problems evaluated let alone treated).
At the moment I feel like I’m dropping to bits, but is that a normal hormone-induced dropping to bits or is my hEDS actually deteriorating? Should I be pushing for a referral or just putting up and shutting up? There is an urgent need for studies on chronic illness in the older age bracket. We need to know if there should be more regular monitoring of our conditions, whether treatments which are affective in younger adults are still as effective in older adults, and most importantly what the normal progression of our diseases should look like as we age because unless we know what’s normal we can’t know what’s abnormal.
Of course, the lack of information on hEDS and M.E. is nothing in comparison to the lack of information on MCAD, particularly in the UK. Peri-menopause has caused my mast cells to go off the charts bonkers yet I haven’t seen a specialist since I was diagnosed 4 years ago. I’m not being monitored in any way, am having to treat myself in the best way I know how, and am basically white knuckling it with no idea what my post-menopausal future will hold. Which is scary considering MCAD may pre-dispose me to leukemia and other cancers and carries the daily risk of sudden death from anaphylaxis. Or MCAD may not predispose me to cancer – noone knows, which is kind’ve my point! It seems that, in respect of the middle aged, no-one knows much of anything when it comes to my diseases and that, as a matter of urgency, has to change.