Behind The Smile – Invisible Illness Awareness: Stiff Person Syndrome

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


Debra Richardson

Debra Richardson

I was diagnosed in 1994 with a rare, chronic autoimmune illness--Stiff Person Syndrome (SPS), following 4-5 years of progressing symptoms.  Having had SPS for most of my adult life, I have learned to live forward with humor, faith, & quirky creativity. With beneficial medication, an understanding of the syndrome, & how it personally affects me, I manage to live a quality of life with insatiable curiosity and a sense of adventure surrounded by my loved ones. "Life isn't about waiting for the storm to pass; it is about learning to dance in the rain." May God bless.  

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