August 23, 2010

IIAW 2010: 30 Things...

You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW).  Well, it's nearly that time again!  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses.  I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost.  If you do, remember to put a link to your post on Lisa's IIAW website!
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Sjogren's Syndrome, Localized Scleroderma, Fibromyalgia, Dysautonomia, Osteoarthritis, Raynaud's Phenomenon.

2. I was diagnosed with it in the year: 2001 when I was 15

3. But I had symptoms since: 1988 when I was two

4. The biggest adjustment I've had to make is: I adjusted what I wanted to do with my life – now I'm focused on building UII into an established not-for-profit organization.

5. Most people assume: My age means my conditions don't affect me as much as they do older people.

6. The hardest part about mornings are: Moving.  Most of the time I'm stiff and my upper back is messed up from the way I slept.  Sometimes I have morning stomach aches and am very nauseas, especially if I woke up too early.

7. My favorite medical TV show is: I can tolerate Royal Pains but that's it.

8. A gadget I couldn't live without is: Microwavable heating pad.

9. The hardest part about nights are: Temperature and humidity changes from the daytime (could be getting better or worse, a change is hard no matter which direction).

10. Each day I take _9 (not counting pain killers)_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: had success with a combination of chiropractic adjustments, moist heat therapy, and mild electro-stimulation for my back (though the benefits were absolutely systemic).  However, the practitioner I went to closed and I haven't found a doable replacement.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn't pick solely based on visibility.  Ask me about what the illness affects, I'd have an opinion.  But the entire point here is that invisible illnesses are JUST AS debilitating as visible ones, not that they're MORE severe necessarily.

13. Regarding working and career: while I have revamped my long-term career goals to be focused on my conditions, in the meantime I'm working a demanding fulltime job.  Most women I know with similar conditions are middle aged or older and had to give up their careers.  I was diagnosed as a teenager and had to face what if I never got to start my career.  I've managed to get to the starting line but am competing against smart young people usually without chronic complications, and every day I make it to work I know the rest may be numbered and my life could flip at any time.

14. People would be surprised to know: I doubt myself and question my limits every day.  Everyone tells me (close friends and web acquaintances alike) that they can't understand how I do so much and I seem to have such energy – well, I don't say that as if it's some great power of mine.  It's my deep seeded fear of what I won't be able to do tomorrow so I have to do it today.  At least it cured my adolescent procrastination…

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways – though it has been the reason I learned just how great online networks can be for building real relationships!

16. Something I never thought I could do with my illness that I did was: my job.  I'm an auditor, which means 40 hours per slow week, and 60+ hours per busy-season week.  Every day I do tasks that don't require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don't exist.  Well, there's a few about Fibro (which rely on sparkly images to indicate nerve involvement) and osteoarthritis (which show hunched over women who straighten up when taking new medicine).  I've never once seen a commercial for Sjogren's, Scleroderma, Raynaud's, or Dysautonomia.  Oh my.

18. Something I really miss doing since I was diagnosed is: walking in the rain.  I actually don't like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun.  Now I go to great lengths to avoid getting wet in the rain, and even so have to combat the joint problems rain brings.

19. It was really hard to have to give up: color guard and singing.  In high school, I was a strong member of a competing color guard and had to skip the year I was diagnosed.  While I finished out the last two years in high school, it was by the skin of my teeth and I couldn't continue in college.  Singing, which had always been one of my favorite things in life, lasted a year into my college experience, but after that I began to find my Sjogren's dryness has damaged my vocal chords/throat just enough to make formally singing in a group impossible.

20. A new hobby I have taken up since my diagnosis is: blogging?  Is that a hobby?  I was diagnosed very young so it's hard to say, because I think I would have gone through many interests in the past 9 years anyway.

21. If I could have one day of feeling normal again I would: I don't know what that feels like.  I had joint, eye, and mouth symptoms going back into my early childhood among other problems.  However, if I could have a time of physical abilities back, I would spin a color guard show one more time.

22. My illness has taught me: to gear my life toward others and be proactive.  If I go through something bad, I make myself ask "how could people who will face this next be helped, and what do I need to do to make that happen".

23. Want to know a secret? One thing people say that gets under my skin is: "well at least you don't have ____".  I've said it before and I'll say it again – if you total your car in a horrendous crash and break both your legs, yes, it's true it could be worse because at least you're alive – but you still have two broken legs!  Why do people think just because it could be worse it isn't bad at all?!

24. But I love it when people: ASK ME QUESTIONS (for information, not to 'prove me wrong').  I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: I have to be honest, I have different ones for different situations.  I have a ring that says "Live His Word" to remind me to have good motives.  I have a bracelet that says "The greatest thing we can do for our Heavenly Father is to love His children" which reminds me to turn the other cheek.  The quote by Shelby in Steel Magnolias sums up my fears about my life "I need your support.  I'd rather have 30 minutes of wonderful than a lifetime of nothing special".  And, the Robert Ingersoll quote, "it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions," keeps me from getting jaded.

26. When someone is diagnosed I'd like to tell them: do your research, and hold to your priorities.  While you can't put your head in the sand, you don't have to give up everything that makes you happy either – if spinning color guard or going to the shore or hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it's gone forever.

27. Something that has surprised me about living with an illness is: the self-respect it helps teach me.  Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I've learned that it doesn't mean I have to put up with cruelty, being marginalized, or being used.  I have so much to do and so little time and resources in which to do it, I don't have time to be bullied.

28. The nicest thing someone did for me when I wasn't feeling well was: my family does wonderful things all the time, but my favorite "little thing" is this: my best friend always asks me where I hurt today before she hugs me.  It could be months since we've seen each other, she could be in the middle of a crisis, and everyone around us can be acting crazy, but she doesn't lay a finger on me until she knows how to hug me without hurting me. 

29. I'm involved with Invisible Illness Week because: it takes the issues I work with every day (personally and for UII) and builds them into a frenzy on the national stage!

30. The fact that you read this list makes me feel: Visible.



Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!


  1. Thanks so much for writing this and linking to it on WEGO Health, Jenny. I feel really lucky to have had the chance to read it. Your 'voice' in it really made me feel the self-respect and spirit you have. (And effected me personally because we are the same age.) You have such a grasp on what's important! It's impressive and inspiring. Seeing the language, honesty, and conviction you have now makes me really excited to see how much you're undoubtedly going to accomplish in the near future!


  2. Nice to see you back on, Jenny. Some of my thoughts... I miss riding bicycles, which I can't do cause of dry eyes, that dang wind; and singing in church, ditto dry mouth. I learned something good about myself: I'm much more flexible than I thought I could ever be, as I come from a hypochondriac mom, as in my new attitude of shrug-my-shoulders, what-can-I-do, no-need-to-complain. I have become WAY more grateful for my life and what I DO have. Strange, huh?

    I confess that I do tell myself and other people "At least I don't have _______." But you're right, if they said it to ME, it would bug me. That ole double standard!

    Keep up the good work!

  3. Hey Jennifer! It was a pleasure to read your "30 Things". If you have time come by and read mine at:

    Maximum Life and Healthy Business Coach for women living with chronic illness or disability.

  4. Jennifer, you have too many systemic things going on for this to be localized scleroderma. It sounds more like systemic scleroderma, and I would seriously encourage you to be thoroughly checked out by one of the real scleroderma specialists listed at the Scleroderma Clinical Trials Consortium: .

  5. Dear "Anonymous",
    Thank you for your concern. You're right, there are way more things going on that Localized Scleroderma alone. However you may have missed where I also identified 5 other conditions, including Sjogren's Syndrome, which are responsible for most of my symptoms. We have determined through testing that I do not have Systemic Scleroderma, for which I am unspeakably grateful. Furthermore, if you knew my symptoms related to the Scleroderma, the localized nature would be quite obvious.

    Additionally, I would like to ask that if you are commenting as someone affiliated with the Consortium or another professional organization to promote said entity, please identify yourself as such. I am not opposed to hearing from you or your organization, but must ask that you provide transparency by stating this for my readers and myself. Thank you for your compliance.


I'm excited you're here - and can't wait to read your comment!

* Transparency Note *
If you are commenting as someone affiliated with a professional organization to promote said entity, please identify yourself as such. I'm not opposed to hearing from you or your organization, but must ask that you provide transparency by stating this for my readers and myself. Thank you for your compliance.