Thursday, September 15, 2011

30 Things About My Invisible Illness You May Not Know

September 12-18, 2011 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved. With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.

As a part of National Invisible Chronic Illness Awareness Week, there is a meme, 30 things about my invisible illness you may not know, that many people participate in. Here is mine.

1. The illness I live with is:
not just one illness; fibromyalgia, polycystic ovarian syndrome, migraines, hypothyroidism, depression

2. I was diagnosed with it in the year:
fibromyalgia - 2009; polycystic ovarian syndrome - 1998; migraines - around 2002; hypothyroidism - 1998; depression - 1999

3. But I had symptoms since:
fibromyalgia - 2007; polycystic ovarian syndrome - 1997; migraines - around 2001; hypothyroidism - 1997; depression - 1998

4. The biggest adjustment I’ve had to make is:
having to use a power wheelchair and/or cane to get around

5. Most people assume:
that there is nothing wrong with me because I do not look sick

6. The hardest part about mornings are:
being in such bad pain that it is difficult to even get out of bed

7. My favorite medical TV show is:
I'm a long-time ER fan. It was part of the reason I became a hospital chaplain.

8. A gadget I couldn’t live without is:
my cell phone; I use it to call doctors, find out information about health issues no matter where I am, and to call my husband, family, or friends when I need help

9. The hardest part about nights are:
waking up so often; I rarely get any restful sleep

10. Each day I take __ pills & vitamins. (No comments, please)
17 but that doesn't include if I need to take additional pain pills or pills for when I have a migraine

11. Regarding alternative treatments I:
have tried massage and acupuncture. Massage is helpful for up to 48 hours but I can only get massages when I find someone affordable (like the massage school in Houston). However, here in Carlsbad, I have not been able to find an affordable massage therapist. Acupuncture did not work for me at all. I tried, I really did, but it was very short-term relief and did not improve long-term as I was told it would.

12. If I had to choose between an invisible illness or visible I would choose:
visible, because then people would be able to see what I was going through versus always wondering or being unsure.

13. Regarding working and career:
I would love to be in ministry again, but the stress and hours that I endured during my 2 years as a hospital chaplain almost killed me. I am continuing to recover and rest and have Sabbath. Will I ever be able to go back to work? I don't know at this point.

14. People would be surprised to know:
how much it hurts to have people who I thought were friends disappear because I am not the person they think I was before my disease. I'm still the same person, some things just have to change because I cannot do all the things I used to do. Please continue to be my friend! I need people to walk this journey with me.

15. The hardest thing to accept about my new reality has been:
not being able to do things I used to do, like running or taking a long walk or spending the day doing fun stuff with my family, because I'm in so much pain, because I don't have the energy, because my stability is so bad, because I am so stiff I can barely walk or sometimes cannot walk at all

16. Something I never thought I could do with my illness that I did was:
fight through two years of 60+ hours of work per week, surrounded by stress, surrounded by illness, surrounded by pain, surrounded by death, surrounded by hate but also surrounded by love, surrounded by joy, surrounded by friendship, surrounded by hope, surrounded by grace, surrounded by peace; I honestly cannot believe I made it through those two years; there were days, many days I wanted to give up, but I didn't and I'm so grateful

17. The commercials about my illness:
are ridiculous; you cannot just take a pill and be all better; if only it were that easy

18. Something I really miss doing since I was diagnosed is:
running, I would give anything to be able to go for a run, right now!

19. It was really hard to have to give up:
my mobility, yes I can still walk (some days), but I have to use a cane to do it and some days I have to use a power chair; I would love to be able to leave the house and walk around without having to use my cane, with the ability to use both of my hands versus having to figure out how to balance things with only one hand because the other hand is holding the cane; I am not truly mobile because I have to rely on something else to help me remain stable

20. A new hobby I have taken up since my diagnosis is:
none that I can think of. I have continued my hobbies of knitting, reading, blogging, drinking coffee/tea, watching tv/movies with my family. I think my plate is pretty full with these ones without adding another hobby. :)

21. If I could have one day of feeling normal again I would:
be in the mountains at a great b&b, get up early, go for a long run, have a big breakfast with Russ and Damaris, go for a hike in the mountains, have a picnic lunch, come back down the mountain, have some alone time sitting beside the river with my journal, have a dinner date with Russ, and then back to the b&b to cuddle up in front of the fireplace

22. My illness has taught me:
to be more grateful

23. Want to know a secret? One thing people say that gets under my skin is:
but you don't look sick

24. But I love it when people:
ask how I am really doing and actually take the time to hear my response and walk this journey with me

25. My favorite motto, scripture, quote that gets me through tough times is:
Zephaniah 3:17 (NLT) - For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.

26. When someone is diagnosed I’d like to tell them:
surround yourself with people who love you and will walk this journey with you regardless of what happens

27. Something that has surprised me about living with an illness is:
how much it impacts every part of my life; there is nothing that I say, do, think, or feel that is not impacted by my illness

28. The nicest thing someone did for me when I wasn’t feeling well was:
bringing a meal for my family

29. I’m involved with Invisible Illness Week because:
I want others to realize that just because you cannot physically see an illness, does not mean it is not there. Please don't make assumptions. Please don't turn your back on someone because they are ill. Please keep walking the journey with me and others like me!

30. The fact that you read this list makes me feel:
that you might want to understand what my life is like; that you care about me; that you want to be a part of my life; that you want to walk this journey with me


  1. I could have written your #5 and #14. It stinks to lose friends over stuff like this, doesn't it? But then again, I suppose they weren't friends in the first place, were they?
    My recent post Thirty Things About My Invisible Illness You May Not Know

  2. Thanks for coming by Shari! I popped over and read your list too. It's so hard to deal with all this - not only our own illness, but how others treat us because of our illness. Blessings to you Shari!

  3. ohappydaisy (Leslie)September 21, 2011 at 1:13 AM

    I just followed your comment link on my blog and was glad to find yours. I didn't know you struggle with Fibromyalgia. I was diagnosed with it when I was 17 and go through a rollercoaster of good days/bad days as we all do. Thanks for sharing so openly. I tend to not talk much about my health struggle for many of the reasons you mention here. But I started the blog to try to be more transparent about my life and share things that help me along the way. Thanks for your inspiration!

  4. Hi Leslie! I didn't realize you had fibro as well. I'm really enjoying your blog so far. If you ever want to chat about fibro, I'm more than willing to. Blessings to you!

  5. significanttrivialitiesOctober 18, 2011 at 11:22 PM

    Ah. I had my 20 year anniversary of my fibro diagnosis this year. 20 years. Yet I am only now beginning to realize that there are parts of this I still have not dealt with. I hear that there is no cure, only dealing with it. I refuse to accept that. I refuse to accept that this is a lifelong condition and that I must adjust my expectations for the rest of my life. Does that make me nuts, or is it just a different way of coping with it? I don't know. I suspect that I need to come to grips with this at some point. Medications don't work for me. Bummer. Lyrica was not the wonder for me that it has been for many others. That was a big shock to me. I get angry when doctors try to tell me I am depressed, instead of dealing with a physical illness. I have been depressed. I am not depressed now. I know the difference. I'm not ashamed of depression, I just want doctors to listen to me.

    I hate that on bad days I have to explain (over and over and over again) why I'm limping, why I'm stiff, why I'm walking slowly. I've come up with many ridiculous answers for why, "I had an ice climbing accident and accidentally put the pick into my leg." Really? No. Not really.

    What it has taught me (in addition to other things) is that pain is a gift. Pain is the way we know something is wrong and it sets limits on us, to keep us from damaging ourselves. Pain has taught me to gratefully accept help and not to be so stinking independent.

  6. Thank you for sharing from your heart. There are days I am almost grateful to be using a cane because it makes the questions different than if I'm just limping along. I don't even know how that makes sense, but in my tired and foggy brain, it does right now. This illness really changes us, from day to day I waffle between whether I'm changing for the good or changing for the bad.

  7. significanttrivialitiesOctober 19, 2011 at 8:56 PM

    To be better today than yesterday, that is the goal. Not physically, though wouldn't that be nice, but to be a better PERSON today than yesterday. Build up a lifetime of that, following after God and becoming more like Christ, now that would be a thing of beauty. If it takes Fibro then (gulp!) I'll take it. Is this sharing in his suffering? Enjoying your posts. Glad I found you.


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