September 7, 2011

IIAW 2011: 30 Things

It's that time of year!  Time for the Invisible Illness Awareness Week "30 Things meme".  You can learn more about the meme, the awareness week (a national movement started by Lisa Copen) here.  Sign up for Lisa's emails (packed with valuable links), and receive the download for a FREE eBook covering many aspects of life with chronic illness (including a chapter by yours truly).  This year's IIAW is September 12-18!

Please post a link in the comments to your meme!  Sharing these responses is one of the most exciting and powerful aspects of this movement.  Enjoy!

1. The illness I live with is: Sjogren’s Syndrome, Fibromyalgia, Dysautonomia, Localized Scleroderma, & Raynaud’s Phenomenon.
2. I was diagnosed with it in the year: Started getting diagnoses in 2001, at age 15
3. But I had symptoms since: 2 years old (1988)
4. The biggest adjustment I’ve had to make is: Knowing if I don’t make decisions to limit my activities, my body will do it for me and not the way I would have chosen to do it.
5. Most people assume: Either that I’m exaggerating my experience, that I’m a hypochondriac, and/or that OTC treatments should be enough.
6. The hardest part about mornings are: Moving.  I tend to be stiff and achy when I get up, and my hands & feet are puffy (inflammation more than fluid retention).
7. My favorite medical TV show is: I can watch a few episodes of Royal Pains, but I spend most the time arguing about the realism.  Won’t go near Grey’s Anatomy, House, HawthoRNe, etc.
8. A gadget I couldn’t live without is: My large microwavable heating pad.  I can hug it, lie on it, squish it into a shape, toss it in my suitcase, use it at work, or heat it up before leaving home/work and have it in the car.  I have a slew of other “warmth” products, I ‘ll have to write about it sometime.
9. The hardest part about nights are: Falling/staying asleep, poor sleep quality, certain bone pains that come on at night, almost always being too cold….
10. Each day I take __ pills & vitamins. (No comments, please) 5-9, not counting ibuprofen.
11. Regarding alternative treatments I: have tried a combo of moist heat, mild electrostimulation, and chiropractic therapies which was very effective.  Unfortunately my local practitioner had to relocateL
12. If I had to choose between an invisible illness or visible I would choose: We can all agree there are things about having an invisible illness that would be more straight-forward if it were visible (mostly with how others treat us).  However, I do like having the choice – sometimes – if and when I want to tell someone.
13. Regarding working and career: So far, (basically) so good.  Some challenges I have/had include: travelling caused problems, we work way too many hours, and its high-stress by nature.  I travel to different client sites, so I have to carry a lot of things with me and can’t settle in with things like ergonomic chairs.  But, my employer is pretty amazing – for example, they work with me for my accommodation to reduce travel.  And through being part of their Disability Network, not only can I be upfront about my limitations but have even gotten very valuable opportunities to hold a leadership role working with those far above my level on many projects. Overall, I struggle to handle this job, and can’t help but worry how long I’ll be able to, but for a shaky little rowboat at least it has good buoys.
14. People would be surprised to know: I doubt myself and question my limits every day.  People tell me (close friends and web acquaintances alike) that they can’t understand how I do so much – and the truth is neither do it, nor do I know that I’ll be able to finish things when I start them.  I’ve a deep seeded fear of what I won’t be able to do tomorrow so I have to do it today. 
15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways.  Sometimes it’s the result of skipping certain events, but other times it’s due to live decisions I’ve made based on my conditions.  For example, I didn’t live on campus in college, as I knew I needed family around to physically support me when I flared.  This had a major impact on my social connections.
16. Something I never thought I could do with my illness that I did was: my job.  I’m an auditor, which means an average of 55 – 60 hrs per week (far more during busy season).  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…however, Venus Williams was just diagnosed with my predominant condition (Sjogren’s Syndrome).  Therefore, there has been a sudden and overwhelming media outburst, bringing rare attention to the problem!
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, knowing it bring the risk of a respiratory infection and the promise of joint & bone problems.

19. It was really hard to have to give up: s

20. A new hobby I have taken up since my diagnosis is:
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: a work ethic.  To care less what people say.  To gear my life toward helping others.  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: “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 QUESTIONS.  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 a few so it’s hard to choose, but two of my favorites are the quote by Shelby in Steel Magnolias which sums up my perspective on 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”.
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 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 favorite “little thing” is when my best friend asks me where I hurt today before she hugs me.  The world could be crashing down around us, 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 is a national (sometimes international) celebration of the joys & struggles I live with every day.
30. The fact that you read this list makes me feel: real, appreciate, and visible.
I can’t really say.  I was diagnosed a decade ago, at 15, so my interests have changed a few times, as you would expect for a teenager.
inging.  This passtime, which had always been one of my favorite things, lasted a year into my college experience.  However, I then began to find my Sjogren’s dryness has damaged my vocal chords/throat, making singing all but impossible.


  1. Thank you for sharing. Thank you for making this very visable.

  2. Thank you so much for sharing your thoughts. I love reading all of the IIW surveys. We all have so much in common in spite of our disease. Hugs. tammy

  3. Thanks for sharing. Here is the link to my post:

  4. Thanks so much for your list, Jen! You do so much to create awareness, and thank you for your honesty about your challenges. I am so happy that so many people are participating in invisible illness awareness week this year. It's great to see the participation! My post is here, and I put a link to yours in it:


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.