September 3, 2009

30 Things About My Invisible Illness You May Not Know

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My List

1. The illness I live with is: Sjogren’s Syndrome, Dysautonomia, Raynaud’s, Osteoarthritis, Fibromylgia, and Localized Scleroderma. Other diagnoses are floating out there.
2. I was diagnosed with it in the year: 2001, at age 15 and about 6-9 months after starting to date Shawn (my high school sweetheart - now husband).
3. But I had symptoms since: 1988, when I was 2 years old.
4. The biggest adjustment I’ve had to make is: it’s hard to say…I was diagnosed young, and I had so many symptoms my whole life, so I was used to many of the ‘adjustments’. I guess the biggest one way mental, about how I’d approach my longterm goals. Taking 5 years to complete college instead of 4 was a BIG adjustment I had to get used to. Having been a top student it’s very hard for me to accept that I just couldn’t do it in the normal time, and many people are going to judge why that is without knowing.
5. Most people assume: I’m making things up or exaggerating the effect this has on my life. I wish there was the invisible illness equivalent of “beer goggles” to help others get what it might be like to life with chronic symptoms.
6. The hardest part about mornings are: I generally just don’t function well in the morning. I have ‘brain fog’, stomach aches, joint stiffness/pain, and usually slight swelling in my extremities. And that’s if I had a good night’s sleep…
7. My favorite medical TV show is: I kinda like Royal Pains, but that’s it. Most medical shows bug me.
8. A gadget I couldn’t live without is: well it’s not a gadget persay, but I can’t life without my sunglasses. My eyes are hypersensitive to light, I wear them all the time.
9. The hardest part about nights are: Getting to sleep/staying asleep. My newest problem is akin to restless leg, my muscles tighten up and I can’t stop moving. It lessens after I take advil. But I had a sleep study done that proved that I am not getting restful sleep, and they couldn’t even pinpoint the exact reason – which means no treatment and no relief.
10. Each day I take __ pills & vitamins: 6 not counting ibuprofen. Not as bad as it could be.
11. Regarding alternative treatments I: Had success with chiropractic and related alternative therapy, but my insurance only covers part of it, leaving me with a copay each visit that is too expensive. “Normal” physical therapy is even more expensive because it’s a copay every visit and they want me to go multiple times each week.
12. If I had to choose between an invisible illness or visible I would choose: That’s really hard. I get verbally attacked a lot for using a handicapped parking tag, because there’s nothing visible like a wheelchair or brace to tell someone why I have it. I always say I’m glad I’m not in a wheel chair (yet), but that doesn’t make my issues any less impactful.
13. Regarding working and career: This too is complicated. For small, part time jobs I didn’t tell anyone my medical issues until after I was settled in and only on a need-to-know basis. For my “career” job after graduation, I told them everything up front. It’s a far more involved job where they need to understand my limitations more, and they have a relatively strong Disabilities program in place. But that doesn’t make it any easier explaining it to direct coworkers. Tackling this problem as someone entering the workforce (not someone who’s been out there for 20 years already) is something I have not been able to find much support about yet.
14. People would be surprised to know: that sometimes I have good days. I have days where I’m not in much pain, where I have energy, or at least where I can push myself through. I have days I can exercise, or when I can be spontaneous. But they are part of a cycle, and up-and-down, and the days will return when none of those things are true. People assume that if I can “push through” sometimes, then there’s no excuse anytime.
15. The hardest thing to accept about my new reality has been: I did not want the illnesses to control my life, I wanted to control my life. I was only 15 when I was diagnosed and was looking at giving up many of my favorite activities. I still try to stay in charge but have to bow to reorganizing my life so I can accomplish some things when I’m younger, before the illnesses progress too far to do them.
16. Something I never thought I could do with my illness that I did was: still working on that. I’m so determined that I don’t discount many opportunities. One thing I think I can’t do is travel to some places because of health risks, so I’m going to have to test that out in the coming years.
17. The commercials about my illness: None. Not one about my major conditions. At all. Rheumatoid arthritis is in the same family of conditions I have but that’s as close as we get to them. There are commercials about osteoarthritis but they don’t apply to me…none of them apply to anyone close to my age, and my osteoarthritis is in my spine, not a joint I can do anything to help.
18. Something I really miss doing since I was diagnosed is: playing in the snow. It causes a LOT of problems.
19. It was really hard to have to give up: singing. Sjogren’s, which attacks moisture-producing tissue, has destroyed so many of my salivary glands that (aside from the EXTENSIVE and ongoing dental problems) my throat has dried out too much to sing.
20. A new hobby I have taken up since my diagnosis is: Again, because of my age at diagnosis, that’s hard to answer. It’s only normal my interests have changed a lot since then and I can’t pinpoint any as being related directly to my illnesses.
21. If I could have one day of feeling normal again I would: well actually I sort of do have these days. But they’re tricky, because when they end and I return to the “ill” world, it’s very hard on me emotionally. It’s so easy to forget.
22. My illness has taught me: that I have to be my own advocate. Its one time its ok (even necessary) to look out for number 1. I have to know my limits, and trust myself. (I’m not diminishing God here, I’m just talking about what I’ve learned that is new.)
23. Want to know a secret? One thing people say that gets under my skin is: take your pick – “stop whining”, “we all have days like that”, “I don’t see why you can’t go to the mall if it’s raining” (inflammation makes it hard to walk), making fun of me for being cold when other people aren’t (HATE that one), etc.
24. But I love it when people: ASK me why, instead of ASSUMING why. Why I do something a certain why, why I’m cold, why I have sunglasses on, and then actually BELIEVE me when I tell them the reason.
25. My favorite motto, scripture, quote that gets me through tough times is: “If God brought you to it, God’ll bring you through it” and the hymn “Be Not Afraid”.
26. When someone is diagnosed I’d like to tell them: don’t lose confidence in yourself, and never back down to a doctor. Stay on top of them or switch to a new one if you’re not getting what you need.
27. Something that has surprised me about living with an illness is: Some of the doors it’s opened. Being diagnosed young, it affected my whole future, and now invisible illness awareness is a huge part of my life. (See my group, UII, at
28. The nicest thing someone did for me when I wasn’t feeling well was: ask if I wanted them to come over since I couldn’t go out.
29. I’m involved with Invisible Illness Week because: how could I not be?! This is a week all about what I’m trying to do all the time – get others to understand invisible does not mean imaginary, and for sufferers to find each other (afterall, it’s not like we can look at each other and see we’re alike, now is it) for support.
30. The fact that you read this list makes me feel: incredible. It means you know I’m not ‘whining’, and that you care about us.

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

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