Friday, 18 September 2009

30 Things About My Invisible Illness You May Not Know

image  Here's my contribution for this week's Invisible Illness Week. If you want to create your own list, see this post.

1. The chronic illness(es) I live with are: (with confirmed diagnoses in writing) (1) Fibromyalgia, (2) Chronic fatigue syndrome (myalgic encephalomyelitis), (3) Irritable Bowel Syndrome and (4) Low Back Pain (Lumbago). As if those weren't enough, I also have symptoms (to some degree or other) of all of the following commonly overlapping conditions; Interstitial cystitis (since 1973), Irritable Bladder, Migraine Headaches, Multiple Chemical Sensitivity, Myofascial Pain Syndrome, Restless Legs Syndrome, Temporomandibular Joint Pain, Vulvodynia and various incarnations of Sleep Disorders. (Not unsurprisingly living with that lot for so long, I'm also being treated for anxiety and depression, am now probably menopausal, also awaiting surgery for fibroids and a possible polyp and, have been diagnosed with breast microcalcifications, that were also judged to require intervention.)
2. I was diagnosed with it in the year: (1 & 2) 2008, (3) 1980 and 1986. (4) 1973.
3. But I had symptoms since: (1) 1995 (2) 1973, (3) 1980, (4) 1973 and, with 20/20 hindsight, I can think of symptoms going back to my childhood and ancestors that now appear connected.
4. The biggest adjustment I’ve had to make is: Everything. Just trying to keep symptoms down to a manageable level feels like a full-time job, akin to the mythical, "Painting the Forth Bridge". Between things that I must do or must not do, must eat or must not eat, can wear and can't wear and, trying to find personal hygiene products, household products, clothing and shoes, medical treatments, etc., that don't cause allergies, adverse reactions or some other nasty side-effects is seriously frustrating, but I have no choice but to walk on such eggshells, every single day.
5. Most people assume: There's nothing wrong with me!
6. The hardest part about mornings are: Waking up in terrible pain, getting breakfast and feeling exhausted, like I'm done for the day - this is without even considering ablutions. Insensitively cheery people when I'm shuffling around, visibly bent, clearly affected by something and feel like shit. Or asking me questions and expecting my brain to be functional before noon!
7. My favorite medical TV show was: Strong Medicine.
8. A gadget I couldn’t live without is: My laptop.
9. The hardest part about nights are: Not being able to get to sleep, or waking early or having recurrent nightmares when I do manage to get some deep sleep.
10. Each day I take 1 - 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Am willing to try those that make some logical sense and are not "snake oil", but generally can't because of the prohibitive ongoing costs.
12. If I had to choose between an invisible illness or visible I would choose: Neither, thank you! This is a tough one, because I certainly wouldn't like to have a physical deformity to deal with too (getting old, fat and ugly is bad enough), but the hurtful things people do because they can't/won't see my illnesses often feel worse than the physical pain I endure on a near constant basis.
13. Regarding working and career: What career? I was "let go" due to ill-health, twice, in 1995 and again in 1997. I have documentary evidence to back this up (as well as the medical certificates issued to me last year), so it is not merely my opinion that I could not work. My symptoms have worsened considerably since that time and, I've deteriorated by a huge margin in the last year.
14. People would be surprised to know: That I once had a brain. That worked! 
15. The hardest thing to accept about my new reality has been: Everything.
16. Something I never thought I could do with my illness that I did was: I'm so physically impaired now, I can't think of a single thing that would fit in this category. I suppose that, "retaining my sense of humour" is the closest thing that counts. That's sick too! :)
17. The commercials about my illness: Don't exist. Online ads are for fake "miracle cures."
18. Something I really miss doing since I was diagnosed is: Singing and dancing.
19. It was really hard to have to give up: My life, my dog, smoking.
20. A new hobby I have taken up since my diagnosis is: You're kidding me, aren't you?
21. If I could have one day of feeling normal again I would: Travel, catch up with friends.
22. My illness has taught me: That empathy and compassion, like romance, are the pure invention of novelists. Well, at least, where they do occur, they seem to be rare and precious gifts.
23. Want to know a secret? One thing people say that gets under my skin is: Well, right behind those who persist in their self-serving beliefs that there isn't anything wrong with me, are those (including doctors) who suggest I need exercise. Especially when I was already having to walk 3 - 5 miles a week when they said it. Of course it caused me to relapse. And no, I've never recovered.
24. But I love it when people: Ask me questions and appear to want to try to understand.
25. My favorite motto, scripture, quote that gets me through tough times is: "When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of this -- always." - Mahatma Gandhi
26. When someone is diagnosed I’d like to tell them: Enjoy for a moment the "relief" in finally getting a proper label for your ills, which, no doubt, took you some time and effort to get. Now prepare for the real fight. Get as much support as you can, join every group you can find and talk to as many people with the same condition(s) as you, as you can. This is the only way you will retain any sanity against the doubters and, hearing many near-identical symptom reports will convince even the most cynical that it cannot be mere coincidence or something you "made up."
27. Something that has surprised me about living with an illness is: How cruel people can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Michaela got me a foot massage. Just listening. And giving me moral support. And assuring me that I'm not going mad.
29. I’m involved with Invisible Illness Week because: I want to help make these illnesses visible, because I would not even wish my worst enemies to have to suffer what I do.
30. The fact that you read this list makes me feel: Hopeful that you will have gained a little understanding about what it is like to live with one (or several) of these conditions.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at


The Mad Cat Lady said...

Thanks for sharing this, Pamela. Being afflicted with fibro and RA I totally sympathise and understand. *hug*

I love the bit about your sense of humour being sick too. Nice one. ;)

Elisa said...

Really love you blog...have visited hundreds pertaining to CFS. Thank you for speaking so kindly and sharing your voice!