30 Things About My Rare Invisible Illness You May Not Know
By Debra Richardson
1. The illness I live with is: stiff person syndrome & insulin-dependent diabetes.
2. I was diagnosed with it in the year: stiff person syndrome (SPS) in 1994, diabetes in 1989.
3. But I had symptoms since: SPS symptoms began in 1989 or 1990. It can take years to get an accurate diagnosis.
4. The biggest adjustment I’ve had to make is: saying goodbye to my former life, the person I was before. Learning my identity is who I am, not what I do. Micromanaging every day with what needs to be done, energy level, severity of symptoms, medication, timing, and lots of pre-planning.
5. Most people assume: A smile & positive outlook means everything is okay. “Coming to terms” with a life-altering diagnosis is not an acceptance conclusion … but a daily coping struggle.
6. The hardest part about mornings are: Wondering/waiting to see what kind of day it will be & waiting for medication to kick in.
7. My favorite medical TV show is: I do not watch medical television. I have a starring role in a reality series yet to be cancelled, though I plead with the producer.
8. A gadget I couldn’t live without is: my insulin pump, glucometer, & laptop. Oh, & phone. That was before diagnosis too! ????
9. The hardest part about nights are: physical comfort, keeping my fatigued body awake past 9, & being gentle with myself over morning intentions left undone. Surrendering my ever-present worries to God.
10. Each day I take __ pills & vitamins (No comments, please): It varies between 20-25, which does not include other treatments/procedures.
11. Regarding alternative treatments, I: exercise, use supplements prescribed by my physicians, & take a needed hot soak or sleep on top of an electric blanket for muscle aches. I enjoy peaceful home surroundings — music, scented candles, fountains, and solitude.
12. If I had to choose between an invisible illness or visible I would choose: invisible. Though greatly misunderstood with “presumed normalcy”, it is nice to pretend to be normal and often to avoid not-in-the-mood explanations or social discomfort/overconcern directed toward me. (Ex. swarmed by a caring group with an unexpected mild spasmodic episode in church.)
13. Regarding working and career: Making a life with physical limitations & challenges is work. Enjoying life is a career. ????
14. People would be surprised to know: Even though I have had SPS for over two decades, coping does not get easier with time. Life remains tough; I still grieve and cry.
15. The hardest thing to accept about my new reality has been: The impact on those I love, knowing there isn’t a cure, & the grim reality of possible future progression; treatment & coping are daily and for life.
16. Something I never thought I could do with my illness that I did was: Raise my youngest child, have a positive impact on others, & run a 5K with a weighted jogging stroller in my mid-fifties.
17. The commercials about my illness: Do not exist. Stiff person syndrome is rare — incidence is one in one million.
18. Something I really miss doing since I was diagnosed is: The spontaneity of unhindered, pain-free movement, the freedom to live each day of my own will, and playing in the grass with children.
19. It was really hard to have to give up: Physical independence & everything that goes with it.
20. A new hobby I have taken up since my diagnosis is: Blogging, web design, dabbling in several things. ????
21. If I could have one day of feeling normal again I would: Living most of my adult life with SPS, I cannot imagine what I would do. Probably run like a hyped dog without direction after being set free from his chained boundaries.
22. My illness has taught me: A renewed love & trust in God. Patience, faith, and hope. The value of humor. Discovering hidden resources of myself. The beauty of a moment. The miracle of simple. The stark reality of everyone’s mortality. Life is fragile & beautiful.
23. Want to know a secret? One thing people say that gets under my skin is: (in a condescending manner) You look good; you look healthy; you must be having a good day … undermining the severity of what I live by how I look. Or, “It’s just…” again minimizing the enormity of my reality.
24. But I love it when people: tell me I inspire them. Helps give me reason & keeps me focused.
25. My favorite motto, scripture, quote that gets me through tough times is:
Thou wilt keep him in perfect peace, whose mind is stayed on thee; because he trusteth in thee. ~Isaiah 25:3 (ASV)
Life isn’t waiting for the storm to pass; it’s about learning to dance in the rain.”
26. When someone is diagnosed I’d like to tell them: I understand. It is hard. Always hope. Love, laugh & live forward… in spite of.
27. Something that has surprised me about living with an illness is: Experiencing the way God works. Discovering a quirky creativity & sense of humor in a tragic diagnosis. Meeting some of the most amazing people living with adversity … inspirations and friends. The number of people who live with a rare/invisible illness & social stigmas is astounding.
28. The nicest thing someone did for me when I wasn’t feeling well was: Hold me in loving understanding without saying a word.
29. I’m involved with Invisible Illness Week because: To be a proactive advocate is being an empowered voice to help an uniformed world understand, if just a little.
30. The fact that you read this list makes me feel: honored, humbled, & hopeful. ????
Copyright © September 2013
From my blog – Chronic Chaos
#chronicillness
#invisibleillness
#raredisease
#stiffpersonsyndrome
