30 Things About My Invisible Illness

California 110

In light of Invisible Illness Awareness Week, here are 30 things about me….

  1. The illness I live with is: sacroiliac joint dysfunction, gastroparesis, and likely an undiagnosed autoimmune condition, but no official diagnosis.
  2. I was diagnosed with it in the year: I was diagnosed with gastroparesis as a child and with sacroiliac joint dysfunction in 2013.
  3. But I had symptoms since: as long as I can remember for the gastroparesis. Since 2012 for my sacroiliac joint dysfunction and since 2010 for my mystery disease.
  4. The biggest adjustment I’ve had to make is: my whole day revolving around managing my pain.
  5. Most people assume: I am an active, healthy person who can stand, sit, and move as I please.
  6. The hardest part about mornings are: deciding if I will use my precious store of energy right when I wake up, or conserve my energy for a later responsibility.
  7. My favorite medical TV show is: I watch both House and Grey’s Anatomy on occasion, but not on a regular basis.
  8. A gadget I couldn’t live without is: My ipad. Great for reading, Netflix, games when I need a distraction, and keeping in touch with family and friends.
  9. The hardest part about nights are: Waking up with pain and not being able to fall back asleep.
  10. Each day I take the following pills & vitamins. (No comments, please) At present, I don’t take any prescription pills or medications. I take Advil on an as needed basis as well as daily vitamins, fish oil, and other supplements.
  11. Regarding alternative treatments: I have tried acupuncture for over a year and did not notice much of a difference. I follow a strict anti-inflammatory diet.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible. As frustrating as it is for people to not know what I am experiencing, many times I just want to be treated as a “normal” person.
  13. Regarding working and career: Because of chronic pain I was forced to give up working full time, and currently I am only able to work no more than 10 hours a week. My ability to grow and progress as a counselor is severely inhibited by my physical limitations.
  14. People would be surprised to know: Many days I am forced to spend most of the day lying down on the couch.
  15. The hardest thing to accept about my new reality has been: Realizing I don’t have control over how I feel physically. No matter how strictly I follow my doctor’s recommendations and no matter how carefully and regularly I exercise, eat healthy, control my stress, take my supplements etc…, I have no control over whether I will have a “good day” or “bad day.”
  16. Something I never thought I could do with my illness that I did was: Travel to visit my family without experiencing a setback.
  17. The commercials about my illness: I have never seen any.
  18. Something I really miss doing since I was diagnosed is: Hiking, rockclimbing, camping, running, working fulltime, and generally being as active as I want to be.
  19. It was really hard to have to give up: working full time.
  20. A new hobby I have taken up since my diagnosis is: Writing and my new blog!
  21. If I could have one day of feeling normal again I would: Go on a hike with my husband and then out to eat at a fancy restaurant and eat whatever I wanted.
  22. My illness has taught me: I am completely and utterly dependent on God for my every breath, my every move, my every moment of continued being.
  23. Want to know a secret? One thing people say that gets under my skin is: You are too young to have back problems.
  24. But I love it when people: Come and visit me when I am stuck on my couch.
  25. A Scripture that gets me through tough times is: But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body. Philippians 3:20-21
  26. When someone is diagnosed I’d like to tell them: This is unbelievably hard, but you don’t have to do it alone.
  27. Something that has surprised me about living with an illness is: How much of my life other people don’t see and how difficult it is to explain my limitations without feeling flustered and embarrassed.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a Slurpee and sit and chat.
  29. I’m involved with Invisible Illness Week because: suffering and pain should be brought into the light.
  30. The fact that you read this list makes me feel: vulnerable.

11 Comments

  1. The fact that I read your post might make you feel vulnerable but it was a wonderful post to read…our illnesses are different but our realities so similar! Thanks for posting this.

  2. Have you been catching Joni Earickson Tada’s radio program lately? If not, check the archives, because she has had several programs on chronic pain. I think of you whenever I hear them in the car.

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