30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: is in figuring out my critical window of health each month and learning to use that time to get as much done as possible before the next Downtime comes.
5. Most people assume: I have no idea what they assume.
6. The hardest part about mornings are: trying to stretch my body back into proper posture, because my body always tries to fold in on itself to protect the painful pelvic region. I walk like a little old lady for the first several minutes each morning.
7. My favorite medical TV show is: (i don’t watch teevee)
8. A gadget I couldn’t live without is: a phone
9. The hardest part about nights are: trying to stretch my body back into proper posture, because my body always tries to fold in on itself to protect the painful pelvic region. I don’t like going to bed still in pain, and have to stretch out over the side of the bed, or do some yoga before bed.
10. Each day I take 3 – 8pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried Qigong, Chi Nei Tsang, Yoga, Acupuncture, Acupressure, Chinese herbs, Massage, Chiropractic, Homeopathy, Meditation.
12. If I had to choose between an invisible illness or visible I would choose: visible, because most people don’t have empathy built in unless they see the illness. ‘Seeing is believing’. If you saw me in a wheelchair, you wouldn’t say, “oh everyone has pain, I have pain, you’ll be fine.” And if you would still say that, well you suck. :p
13. Regarding working and career: I was fired from a job for missing 1-3 days each month due to endometriosis. I have since that time had to argue my right to work with three other employers, and I always live with the apprehension that one day I’ll be fired again, and have to go through legal proceedings once again.
14. People would be surprised to know: that I have at times lost the will to live because of this illness.
15. The hardest thing to accept about my new reality has been: guilt management. I did not ask for this disease – I was born with it. The fact that I must miss work because of the pain is NOT MY FAULT, and I have a RIGHT to be accommodated. The fact that I still have pain despite surgery, trying numerous pain meds, trying hormones and alternative therapies is NOT MY FAULT, and I have a RIGHT to be believed. But still, the guilt haunts me. The fact that people don’t believe my pain hurts me emotionally. The hardest thing to accept is that I do NOT have to have such guilt.
16. Something I never thought I could do with my illness that I did was: train for and bicycle 66 miles for the Cinderella Ride. :)
17. The commercials about my illness: …are there commercials about endometriosis? If so, they’re probably pharmaceutical companies trying to trick women into taking hormones to ‘treat’ or ‘cure’ endo – THEY LIE.
18. Something I really miss doing since I was diagnosed is: eating anything I want. Research has proven that eating red meat and ham makes endo worse, as does spicy food, citrus, caffeine, tomatoes and alcohol.
19. It was really hard to have to give up: drinking pop and eating sweets, because I discovered on my own that High Fructose Corn Syrup brings on severe pelvic pain, as well as joint pain immediately, and the pain lasts for days.
20. A new hobby I have taken up since my diagnosis is: blogging for endometriosis awareness. :)
21. If I could have one day of feeling normal again I would: (n/a – I DO always have a few days a month where I do feel normal, and I use those days to get as much done around the house as possible).
22. My illness has taught me: to continually test my threshold of pain, patience, willpower, stamina and compassion.
23. Want to know a secret? One thing people say that gets under my skin is: “compared to what you go through, my pain is not so bad”. EVERYONE’S pain is REAL and VALID and must be accepted at face value as hardship for the person suffering. To demean your own pain like that instigates some sort of one-up contest, which I will not be a part of. It only insults me.
24. But I love it when people: say things like, “may today be pain-free” and “here’s hoping today brings less pain.”
25. My favorite motto, scripture, quote that gets me through tough times is: Don’t ever give up.
26. When someone is diagnosed I’d like to tell them: that Danazol, Lupron, all GnRH hormones as well as birth control pills are NOT the treatment answer, no matter WHAT their doctors tell them. Sadly though, women usually have to find this sad truth out for themselves.
27. Something that has surprised me about living with an illness is: the amount of dread and guilt I harbour, which as a result, affects all aspects of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: come over and keep me company so that I would not be alone and afraid.
29. I’m involved with Invisible Illness Week because: the more our voices are read and heard, the closer we get to eventual validity and recognition for what we go through.
30. The fact that you read this list makes me feel: validated.
Thanks to Susie Collins over at The Canary Report, I found the Invisible Illness Week website, which has the meme posted above. Apologies to my fellow endo bloggers if you’d already posted about the Invisible Illness website – I just didn’t see it til now.