Behind The Smile – Invisible Illness Awareness

30 Things About My Invisible Illness You May Not Know

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 symtoms 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, with medication, timing, and lots of preplanning.

5. Most people assume:  A smile & positive outlook mean 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)  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, 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, often to avoid not-in-the-mood explanations or social discomfort/overconcern directed toward me.  (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; & alone, I 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, 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, 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 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, 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 © 2013



15 thoughts on “Behind The Smile – Invisible Illness Awareness

  1. I relate to your SPS insight and experiences. I’m in the middle of IV IG this week.
    Keep fighting the good fight.

  2. Hi Debbie, I have a quick question about your blog. Could you email me when you have a chance? Thanks! -Cam

  3. No.23. oh yes! I want to scream, when people say I look well. I don’t ‘feel’ like I look.

    I find myself staring at the beauty of a tree. I marvel at what it takes to make just ‘one’ cell thrive (the value of free learning, on the net), and what it must take to make a whole human/animal to do just that!

    I have no friends, but talk to one very very nice lady on the net. I’d never have known she existed, but for sps (she has it too).
    Sadly, in the world around me, I’ve found misunderstanding and hurt, I’d like to believe people are honest and kind, but I’ve encountered different to that . That’s maybe why, the lady I’ve met on-line is so important.

    I’ve noticed a lack of inhibition. which was not me. I was quiet and lacked good communication skills, socially inept. I still am, yet have changed behaviour-wise, in certain situations.
    I’m a NEW me, but also the same old me. (try and explain THAT to a Dr or Neurologist. They don’t ‘hear’)

    The worry about the future.and hearing my neuro say he doesn’t know.

    If not for my friend (online or off, still a friend) I would be alone. May she never change or leave me.
    Good thoughts to all 🙂

    • I am sorry for the emotional pain you are feeling, understand how one looks is not how one feels. I experience many of the emotions you have shared. By the grace of God, “one day at a time.”

      Sending well wishes!

    • After reading your comment, I feel for you. I too have SPS, diagnosed in August 2017. Somewhere, I don’t remember where, I read about a Facebook group specifically for people interested in SPS – Stiff Person Syndrome Group. I have no doubt that you can find friends who understand what you are going through and maybe even help you in some way.

      Hoping you all the best!


      • Hello!

        I am sorry for your diagnosis. Thank you for your suggestion. I was actively involved in a small intimate support group for many years. I made several friendships I maintain to this day outside of a group.

        Support groups are a great way to find others who understand the syndrome.

        I wish you health & happiness! Thank you for sharing!

        All my best!

  4. Hi Debbie,

    I recognize a lot of what you are writing, I was diagnozed in May with SPS.
    Got IVIG in June and felt very sick afterwards, could hardly go very instabel, finally in August I could walk with a stick and it felt great, it lasted 6 weeks, than the probems with the balance began again and again I need to go with a walker otherwise I fall. The doctors here say it is anxiety, I myself say no, why could I go with hardly any problems and suddenly it starts again.
    I am also troubled with anxiety disorders (for 3 years)which no-one listens to, stress they say and I now can almost shout out its not that.
    I have gone through the phases of mourning, leaving you’re old life behind and look till what you still can, but I am in now in the situation again it’s hard, but I keep possitive.
    Again they are sending me to a psychologist, I have earlier been sent to a psychiatrist en psychologist they said I was not depressive.
    I also have sleeping problems, sleep 4-5 hours during the night, so mostly tired during the day.
    I will keep following your blog, down here there is hardly anything to find, there is a website in Germany, stiffmann-de, which give good information and here in the Netherlands they don’t know how many people are diagnozed with SPS, cannot be more than 17-20 accordinge to our population.

    thank you, take care

    • Hi Ivonne!

      I am deeply sorry you have doctors who do not understand the anxiety issues that are physical symptoms of the syndrome. Often, SPS gets misdiagnosed as a conversion disorder. I am fortunate to have had neuros who understand the syndrome. In a recent conversation with my doctor I told him that I have improved with mobility but cannot shake the open space fear. His response was that the compromised GABA in Stiff Person Syndrome will cause that.

      I still have moments I mourn. It is hard to live with the daily demands of SPS…the physical and the emotional. For me, it is a constant juggling act of meds, daily energy, what is required of the day, and unexpected surprises. Occasionally, I allow myself to grieve the real loss of my former life, the demands of my current, and future uncertainty. I just work hard not to allow myself to stay there. If you have problems with deep depression, a consult with a professional might help. Make sure he/she understands the syndrome and watch any medications prescribed. Some antidepressants can actually create or worsen symptoms.

      All my best,


  5. You are one wise and couragous lady, Debbie!

    I have followed your writings since I was diagnosed in 2011, and in the beginning, it felt like, you were in a way the only one, who understood. The doctors do not, because they have no first hand experience in this.

    I have sidekick inbedded in this illness that makes my life a mess: I am utterly totally afraid of open spaces, and to me open space can sometimes be 20 by 20 inches, or even centimeters. And that is something that very few people understand. I am a prisoner in my own home, since I live alone, i am dependent on someone to come and help me out. That I amhoping would be lesser of a problem thanks to a new medicine that I have started to take. Let’s hope so!

    I try to be optimistic, and some of that has returned, and I have taking up knitting, sewing, embroidery, crocheting and painting. The next on the list is blogging. I don’t do sny of my newly found old hobbies in big doses at one go, but in moderate. And now I have also understood the meaning of pauses and rest :-). It only took about six months to figure that one out… That my body needs rest, and when it does, I better do it, or else…

    I wish you all, Debbie and your readers, or fan club I would say, a wonderful 2014, may it be as good as it can be!

    I am also in need of a pen pal, so if someone would like to do that, maybe Debbie can give my email address to that person.

    Best wishes,

    • Hi Kristi!

      Thank you for the encouragement and sharing. The open space issue is a problem for me! It varies by the moment and situation, just crossing a church aisle. I have days I can go, but dues must be paid…rest. I try to pace.

      It sounds like you are a gifted, crafty lady. Sewing a button is a biggie for me. I guess a positive of SPS is finding hidden gifts within yourself that lay forgotten or undiscovered. I know someone who really enjoys Pinterest, an outlet on facebook. She showed it to me recently and there are many creative and fun ideas on there plus you can create your own board. Blogging is fun and therapeutic. I took a break for awhile. Life got very busy.

      I am sending well wishes your way that the new med will help give you some independent freedom.

      All my best!


  6. Debbie, you have an amazing gift of being able to express… Not only your thoughts and feelings, but also a summation of what so many people deal with on a continual and daily basis. Thank you for sharing your insights, your gift, your talent and your love!!! May GOD continue to Bless You because of it!!!

  7. Hi Debbie!
    I have followed you and your writing for a long time now. It’s inspiring you put this blog together! Thank you!
    When I read #21 I realized I have not allowed myself to think about that in a LONGGGGG time! I have tears in my eyes, but I would choose the SAME thing! I would RUN like a loose dog that has been caged most of his life! That has ALWAYS been my answer since I got this!!
    I was diagnosed in 2006, and YOU were one of the reasons why! YES!!! YOU!!! I had been diagnosed with Osteoarthritis and I KNEW that was wrong!! I was SO mad because I could NOT relate the muscle spasms TO Osteoarthritis! It did NOT make sense to me!! Finally I told my Rheumatologist I was seeing I wanted a referral to see a Neurologist. She became LIVID with me!!! Livid might not be the correct word – let’s use ANGRY, VILE, ASTOUNDED, I could go on, but she was that way because “I” doubted her diagnosis! I sure did!! NOWHERE in the research I did online did the type of muscle spasms WE suffer from appear to be as much of a problem as they were for me! It didn’t make ANY common sense. Out of ALL the articles I read about ANY disease that causes muscle spasms, THIS disease was the ONLY one that fit me to a “T”!! I DID get my referral to a Neurologist, and I STILL see him to THIS DAY!! In fact, I saw him today!!
    I saw my Neurologist because I even get muscle spasms in my eyelids!!! Yes. My eyelids fluttered constantly DRIVING ME CRAZY!!!!! Wow!!!! I asked my doctor about this, and since there is not a whole lot they can do for us, this was one thing he COULD do! He was SO HAPPY!!! He stood up and handed me a brochure about Botox! Hmmm? Okay! I WANT to try this, PLEASE!!! I tried it and got my first injection INTO my eyelids on 12-15. He said in 2 weeks you will notice a HUGE difference. He was RIGHT, as usual!!! I LOVE my doctor!! Slowly my eyelids quit twitching as much. I was getting relief!!!!! WOW!!!!!! Oh my gosh!!!!! I have to go every 3 months, so I went for my 2nd round today! I told him I needed more medication in my left eye and a tad more in the right eye, but he said the 2nd set of injections would work better than the first. I totally trust my doctor! In two weeks I’ll know if this is working better! So I wanted to share if anyone with this disease has muscle spasms in their eyelids, the Botox injections DO WORK!!!!
    I LOVE you told us you sleep on an electric blanket!! I NEVER thought of that! Wow!!! Excellent idea!!! It’s like a HUGE heating pad!!! I’ve struggled with never having enough room on the heating pad, why did I NEVER think of an electric blanket? THANK YOU!!!!!!
    You continue to be an inspiration to me and always will be! Congrats on that 5K! I won’t be running ANYtime soon as I use a wheelchair as my buddy to get me thru the distances, but it’s my buddy. New friends have to accept that is a part of me or else they can’t be my friend. I know just HOW lonely this disease is. I WISH I had a girlfriend I could confide in. That is one thing I miss the MOST! No one likes to have to lift my chair into their vehicle if we are to go somewhere, so . . . I also sometimes wonder if the only reason my husband is still with me is because of the disease? He promised he would never leave me, but we do not have your typical marriage. There are a LOT of things that change our lives drastically, but I try to push those aside and not think of them. I prefer to stay in the positive and stay happy! I focus on it! My survival depends on it!!
    We will ALL get through this, and being together sure helps! Thanks for your blog! Thanks for ALL you do and have done through the years!!
    Laurie Carlson
    Port Huron, Michigan

  8. Hi Debbie,
    I feel like what I am missing is resources after reading this page. You have a doctor that prescribed exercise and maybe ohhsical therapy. Wait, you have a doctor that understands SPS. I’m to busy teaching doctors to have time for them to help me. Close to 5 years officially diagnosed, suffered for 13+ years with ping pong back and forth with one doctors saying it’s something else to see another, and that doctor sayings need to see the one doctor I just happened to be referred by.
    Finally hope came my way with the Cleveland Clinic and a nero from OSU. 2yrs of testing, a bad reaction to IVIG. Once they ruled everything else out they made the decision it was SPS. Then it was “I want to see you back in a year.” A year, it’s not like winter to summer changes my symptoms or anything.
    Now I have the opertinity to move, just sold my house. I was set on SC for lighter winters but to be honest if their is another state that has doctors that know about SPS and can help me improve my quality of life besides all the pills I’m open to renting an apartment someplace else and trying that.
    I’ve searched for support groups, never found a word until you mentioned one.
    Some insight would be great, is their a network of doctors that are taking this rare illness in and sharing information? In what city, state, county are these doctors located?
    I’ve had a long 5 days with Medicare forcing me to change a med since I couldn’t continue affording $319 a month for one pill. The new one isn’t working so well, so I have a special visit in the morning if I can find a ride, or maybe I will be ok to drive if I get some decent rest tonight? But I won’t know until the morning.
    Thanks in advance,
    Scott (lost and confused with SPS)

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