Monday, September 8, 2014

30 Things About My Invisible Illness You May Not Know: A Teen's View


September 8-14, 2014 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including some chat sessions September 8-14 online with special guests.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com 

Today, our contributor, seventeen-year-old Alexandra Dittrich, kicks off observance of the week by sharing "30 Things About My Invisible Illness You May Not Know" from her teenage point of view... 

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 ...She began to use a new name for God. She said to him, “You are ‘God Who Sees Me.’” She said this because she thought, “I see that even in this place God sees me and cares for me!”
~ Genesis 16:13, ERV ~

  1. The illness I live with is: undiagnosed global joint pain
  2. I was diagnosed with it in the year:  I have yet to be definitively diagnosed, but I began seeing doctors about my pain in 2012.
  3. But I had symptoms since: 2011
  4. The biggest adjustment I’ve had to make is: taking medicines and knowing my limitations
  5. Most people assume: that there’s nothing wrong with me
  6. The hardest part about mornings are: being unable to put pressure on my ankles
  7. My favorite medical TV show is: Scrubs
  8. A gadget I couldn’t live without is: my iPod. Can’t live without my music!
  9. The hardest part about nights are: finding a position comfortable enough to fall asleep in… and stay asleep in.
  10. Each day I take __ pills & vitamins: 2-3, varying from day to day
  11. Regarding alternative treatments I: drink lots of green tea and rely on essential oils
  12. If I had to choose between an invisible illness or visible I would choose: invisible
  13. Regarding working and career: I’m an elementary school custodian and high school student.  My goal is to attend college and become a writer.
  14. People would be surprised to know: how active I actually am.  People in the medical field assume I am in pain because I lead a sedentary life.
  15. The hardest thing to accept about my new reality has been: that I may never truly feel physically comfortable in my body ever again
  16. Something I never thought I could do with my illness that I did was: break dance
  17. The commercials about my illness: make me incredibly vexed. The side-effects of the illnesses’ prescribed drugs make it sound more like a death-sentence than a cure for the symptoms!
  18. Something I really miss doing since I was diagnosed is: writing for long periods of time.
  19. It was really hard to have to give up: my old, non-supportive shoes for prescribed ones.
  20. A new hobby I have taken up since my diagnosis is: walking
  21. If I could have one day of feeling normal again I would: go for an extensive run
  22. My illness has taught me: that not all joint pain is the same, nor is it all caused by the same triggers
  23. Want to know a secret? One thing people say that gets under my skin is: “You’re too young to have that kind of pain! You must be lying!”
  24. But I love it when people: think it’s cool that my joints can predict the weather
  25. My favorite motto, scripture, quote that gets me through tough times is: “We may cast lots, but the Lord determines how they fall.” (Proverbs 16:33, NLT).
  26. When someone is diagnosed I’d like to tell them: “Don’t let your diagnosis get in the way of you living your life!”
  27. Something that has surprised me about living with an illness is: how much it changes how you perceive others in the chronic illness community
  28. The nicest thing someone did for me when I wasn’t feeling well was: pray over me and share their company
  29. I’m involved with Invisible Illness Week because: I feel it is important for people to know that not all illnesses stick out like a sore thumb (no pun intended).  I feel that people need to know that invisible illnesses are just as vivid and real as the ones you can see with the naked eye.
  30. The fact that you read this list makes me feel: that me, and my diagnosis, aren’t just a smudge on the earth. You, reading about me, means that there’s hope for me--hope for a cure--as long as caring people still exist.

 Pray: Lord God, as You have numbered each hair knit to my head, so You know each broken piece You have formed into my being. Help me to accept the way I was made, and find the joy in each new and glorious experience You grant to me through what the world sees as my pain and suffering. Use my differences, my aches and sorrows, to benefit Your kingdom and to benefit the lives of Your children.

~ Alexandra Dittrich

5 comments:

  1. Fabulous!!!! Must have got some wisdom from her mother!!! Love this, Barb and Alexandra. Thanks so much! Colleen Swindoll-Thompson

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    1. Thank you, my sweet, sassy friend! Now, if we could only get this tough cookie a diagnosis and some relief. :-/

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  2. Great post! Praying you find some answers soon. Sometimes, the hardest part is not knowing what is causing you distress.

    As an aside, I feel your pain - literally. I, too, have global joint pain and share your wise views on your invisible illness. Even though I am "old" ;-) my doc looks at me with great puzzlement in his eyes. I am so sorry you are going through this at your age. I guess at least I've earned mine by living quite a few years longer than you!

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  3. Alexandra,

    I found myself shaking my head in agreement with you about the points you have described. I was diagnosed with fibromyalgia in my early 50's. You have an incredible gift and maturity in your writing style. To have discovered how to manage and cope with the pain of your invisible illness at such a young age is remarkable. You will certainly achieve your goals as a writer. God bless!

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  4. Dear Alexandra,

    You are one awesome woman, and I feel privileged to have met you in person, You will NEVER be invisible to all of us who love you!

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