30 Things About My Invisible Illness You May Not Know
1. The illness(es) I live with are: lupus (SLE) (including raynaud's, migraine, vasculitis) and according to my rheumatologist, "probable rheumatoid arthritis" which was originally diagnosed as "inflammatory arthritis" during my childhood.
2. I was diagnosed: with Kawasaki disease as a baby and then non-specific inflammatory arthritis at age 12 in 1992. The raynaud's and migraines showed up with a re-occurrence of the arthritis in 2006. I was officially diagnosed with lupus in early 2011.
3. But I had symptoms since: Well, that doesn't really leave much of my life unaffected by autoimmune disease, does it? The worst of the symptoms have been present since September of 2006.
4. The biggest adjustment I’ve had to make is: no longer being able to rely on my body to always do what I ask it to do.
5. Most people assume: that I'm extremely healthy. Also, that I'm not in pain, when in fact I'm in varying degrees of pain most of the time.
6. The hardest part about mornings are: getting out of bed (physically and mentally!)
7. My favorite medical TV show is: House, I guess. I don't watch much TV.
8. A gadget I couldn’t live without is: my MacBook.
9. The hardest part about nights is: getting everything done before I'm too exhausted to continue.
10. Each day I take 17 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: think massage and other kinds of holistic healthcare and practices are really important. (Especially yoga and mindfulness meditation). On the other hand, I think there are a lot of snake oil salesmen out there who use alternative medicine as a way to take advantage of people. Always be wary of anyone who wants to sell you on a specific diet/detox/treatment that's going to cost a lot of money!
12. If I had to choose between an invisible illness or visible I would choose: Unfortunately, one of the main symptoms of my version of lupus is vasculitis, which is both painful and visible when it affects the blood vessels in my skin. As much as I hate being "invisibly ill," I have to say that the visible manifestations (and others like hair loss, rashes, moonface) are harder for me to deal with. Though it may be more difficult to get people to understand my experience when my illness is invisible, it also give me more flexibility in who I disclose my illness to and how much I choose to reveal.
13. Regarding working and career: for the past six years I've been training for an academic career. I'm optimistic that there's a position out there for me, but I also have a backup plan. And a backup plan for the backup plan. Healthcare access and insurance benefits will now always be one of *the* most important factors in my choice of employment.
14. People would be surprised to know: Although I tend to appear calm and composed most of the time, I grapple with a lot of anger, frustration, sadness, and even hopelessness about my future. I don't let it control my life, but it's always there. I'm working on it.
15. The hardest thing to accept about my new reality has been: I may not be able to achieve all the goals I set out for myself. Also: sometimes the people I love will not be able to accept my reality.
16. Something I never thought I could do with my illness that I did was: become stronger and more fit than I was before I became ill.
17. The commercials about my illness: make it sound easy to get relief from pain and put the disease into remission. Imagine if they were to try to advertise prednisone and methotrexate on TV!
18. Something I really miss doing since I was diagnosed is: dancing (of all kinds, but especially ballet)
19. It was really hard to have to give up: spontaneity (now I have to plan pills, meals, sun protection, transportation, sleep, etc-- everything is so carefully calibrated)
20. A new hobby I have taken up since my diagnosis is: Does adopting a cat count as a hobby?
21. If I could have one day of feeling normal again I would: drive to the coast (4+ hours) and spend all day and all night at the beach
22. My illness has taught me: to be kind to myself
23. Want to know a secret? One thing people say that gets under my skin is: "Well, I wouldn't mind being sick if it meant I'd look like that." (that = thin) Or "Well at least you don't have to work at losing weight."
24. But I love it when people: reach out and offer help without being asked.
25. My favorite motto, scripture, quote that gets me through tough times is:
"We must be willing to let go of the life we have planned so as to accept the life that is waiting for us." — Joseph Campbell (also attributed to E.M. Forster)
26. When someone is diagnosed I’d like to tell them: just because you have an illness doesn't mean you *are* your illness
27. Something that has surprised me about living with an illness is: the amazing support I've found in the spoonie and patient advocacy communities online.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend bought me a week's worth of groceries, put them away, did my dishes, and the gave me a hug and told me that I was the strongest person he knows.
29. I’m involved with Invisible Illness Week because: There's still so much shame and stigma surrounding chronic illness and disability. I hope that by putting a human face on invisible illness I might be able to convince someone to reconsider their own experience-- or someone else's.
30. The fact that you read this list makes me feel: Awesome. Seriously. Thank you. :)