Monday, August 31, 2009

Secrets of Invisible Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: POTS (Postural Orthostatic Tachycardia Syndrome) which is a specific form of dysautonomia (dysfunction of the autonomic nervous system). In addition, I have MCS (multiple chemical sensitivity), IBS (irritable bowel syndrome), postural diastolic hypotension, non-24-hour circadian rhythm disorder, Raynaud's, asthma, and allergies.

2. I was diagnosed with it in the year: 2005 (POTS) - earlier for others.

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is: Giving up a lot of independence.

5. Most people assume: I'm much healthier than I am when I am able to go out socially.

6. The hardest part about mornings is: Waiting for the muscle aches, malaise, and fatigue to ease, though that doesn't always happen.

7. My favorite medical TV show is: Mystery Diagnosis.

8. A gadget I couldn’t live without is: My laptop. It's how I work part-time and do much of my socializing.

9. The hardest part about nights is: Being awake alone and knowing I will need to sleep all day.

10. Each day I take 2 to 3 pills & vitamins. (I tend to have uncommon reactions and side effects, so I'm not on many medications.)

11. Regarding alternative treatments I: Can even have severe reactions to "natural" remedies. One such attempt sent me to the ER.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Prior to and during my diagnosis, it was extraordinarily difficult to cope with not being believed, but now that I have validation and a diagnosis, I'm grateful to still look like my old self.

13. Regarding working and career: I had no idea how much self-esteem and worth I gained from my career. Losing it was one of the hardest grieving processes I've ever had to go through. I felt lost and worthless. Readjusting the way I view myself, my work, and allowing God to impart my value as a person has been a challenging and humbling road.

14. People would be surprised to know: How sick I can be on "bad days" when no one sees me but my family.

15. The hardest thing to accept about my new reality has been: Losing my "old life," job, friends, freedoms, and feeling that people and opportunities pass me by.

16. Something I never thought I could do with my illness that I did was: Find satisfying and flexible part-time work from home.

17. The commercials about my illness: Don't exist. Though many people (especially young women) suffer from dysautonomia, there is very little public awareness about it. The closest it came to being public was when a member of "The Wiggles" had it and had to quit the group.

18. Something I really miss doing since I was diagnosed is: Playing music in an ensemble.

19. It was really hard to have to give up: My career and driving. Though now, after years of healing, I can do some driving.

20. A new hobby I have taken up since my diagnosis is: Pilates. I have also had more time to read and crochet, which I had enjoyed before but never had time to do.

21. If I could have one day of feeling normal again I would: Travel on an airplane and spend all day outside in hot weather biking, hiking, playing tennis, and being active.

22. My illness has taught me: That when dreams are shattered and I am weak, Christ is my Rock, my true friend, ready to help bear my burdens and strengthen me.

23. Want to know a secret? One thing people say that gets under my skin is: "Hope you feel better." or "Let me know if I can help." Those are usually polite ways for people to disengage.

24. But I love it when people: Keep in contact with me through email and maintain friendship with me even when I can't attend events, return phone calls, or have to turn down repeated invitations.

25. My favorite motto, scripture, quote that gets me through tough times is: "Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord." -Psalm 27:14 (Amp)

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
- Psalm 73:26

26. When someone is diagnosed I’d like to tell them: Learning to live positively within your limitations is the key to enjoying life with dysautonomia.

27. Something that has surprised me about living with an illness is: How much relief came when there was no more professional and personal pressure to "do it all" and achieve.

28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me food, a game/movie, and offer genuine friendship with lots of laughter.

29. I’m involved with Invisible Illness Week because: The psychological impact of not being believed was excruciatingly painful for me before I was diagnosed. I felt like a failure, and many people looked at me as if I was a "slacker" because I suddenly couldn't physically keep up with expectations.

30. The fact that you read this list makes me feel: Encouraged that you learned something about my experience with dysautonomia, how faith in Christ has anchored me, and that chronic invisible illness is more complex and difficult than it appears.

My friend Rachel completed this list of 30 things on her blog, and so I thought it would be fun to do it too. It was started by Lisa Copen of Rest Ministries in honor of Invisible Illness Week, which is coming up soon!


Rachel said...

Thank you so much for sharing, Kristen. I appreciate your openness and honesty.

emily said...

If I read yours before I write mine I will be totally intimidated b/c you are such a good writer! I have to do mine tomorrow so I can read yours and everyone else's! I'm soooo glad you did this b/c I know yours will ROCK!

emily said...

Tonight was my night to read yours. I'm reading one at a time b/c I want to really take them in. Yours was of course, better than mine! Haha! I had to say it! Because of course, I'm reading and thinking Oh hers is better, or I wish I'd thought of that! :)
Anyways, I love that these help others who don't know about these illnesses, but I also love the lists b/c I feel like I am learning more about everyone. Okay, I've only read yours and Rachel's so far...but you get my point. I just learned so many neat little things about you (like Pilates, missing playing music (me too!), liking tennis (me too!)) and also other insights. I really liked your #29 b/c that is so true--and also how you put the visible/invisible thing. Like so many more but then I'd be here all night writing! Thank you for taking the time to do your list!

Anonymous said...

I also have dysautonomia, along with POTS, MCS, benign hypermobility syndrome, and degenerative disc disease. I am sorry that you have such a rough time with this horrible disease as well. I keep going because I know GOD can & WILL heal me ! thanks for posting this, I really want to raise awareness.