30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness WeekThis coming Sunday Monday, September 14, is the kickoff of Invisible Illness Awareness Week.   This week is a project of Rest Ministries, which provides support for the chronically ill in a Christian setting.  Invisible Illness Awareness Week is about both shining the light on invisible chronic illnesses, to help others understand that all around them — looking perfectly normal — are people struggling with a condition that is not obvious to an observer.  The week also provides support, encouragement, and help to those of us who have an invisible illness.  This year’s program is offered completely online, to recognize that it is difficult, if not impossible, for a chronically ill person to fully participate in a week-long conference in person… even if he or she can afford to travel to it and stay in a hotel all week.

As part of the awareness effort, I’m participating in the “30 Things” meme, to share about my invisible illness: Ehlers-Danlos Syndrome.

  1. The illness I live with is: Ehlers-Danlos Syndrome, Classical Type
  2. I was diagnosed with it in the year: 2008
  3. But I had symptoms since: birth.  I remember being diagnosed with “growing pains” when I was about 8, and I started spraining ankles when I was 13 or 14.
  4. The biggest adjustment I’ve had to make is: learning to forgive myself for not being able to do everything I want to do or feel like I should do.  I think most of us are harder on ourselves than on others.
  5. Most people assume: I’m not really sure, since I’m not in their heads.  I do get dirty looks when I park in a handicapped parking place, since I’m young and look “just fine.”  People I’m close to seem to assume that I’m doing fine unless I complain, and I don’t tend to complain until it’s probably too late.
  6. The hardest part about mornings is: waking up to the alarm clock.  I do much better when I can just sleep until I wake up, which is a fairly consistent time anyway.
  7. My favorite medical TV show is: It would have to be Scrubs.  The “serious” shows annoy the bejeebers out of me.
  8. A gadget I couldn’t live without is: my iced tea maker!  And my COMPUTER!  And my arthritis gloves!  And my super-wonderful, long-lasting ice packs!  And the microwave!  Hmm, I should probably stop now, huh?  🙂
  9. The hardest part about nights is: the nights I can’t sleep.  When my hands are hurting badly, they wake me up from sleep, and they’ll keep me awake if I’m not already sleeping.  The worst part of this is that they usually hurt too much to hold a book, so I’m just left there lying in the dark and thinking.
  10. Each day I take 7 pills & vitamins, plus 4 puffs on the asthma management inhaler and 4 sprays of my allergy nasal spray.  (And I know I’m not taking everything I should be.)
  11. Regarding alternative treatments I: wholeheartedly agree with the movement to call these complementary treatments.  I am very careful about herbs and other supplements, especially when I don’t know how they will interact with my medications or with my hard-to-medicate body.  Physical treatments, like massage and cranio-sacral therapy and even sitting in the hot tub, are very helpful for EDS.
  12. If I had to choose between an invisible illness or visible I would choose: You know, I’d actually stick with the invisible illness.  People say stupid enough things to us already (“But you don’t look sick!”); I can only imagine the stuff that pours out of people’s mouths when there’s an obvious illness or appliance one has to use.
  13. Regarding working and career: I am very fortunate.  I work as a software engineer, so I could do my job if I were nothing but a brain in a jar, and my employer has agreed to allow me to telecommute full-time as a reasonable accommodation to disability.
  14. People would be surprised to know: that I am a Dominican Sister, and that my experiences with illness have deeply formed and shaped my spiritual journey.
  15. The hardest thing to accept about my new reality has been: the many little losses that I’ve faced.  Because it’s so easy to dislocate or injure a joint, I’ve been afraid to go out for walks or bicycle rides on my own.  After 28 years, I am no longer able to play my flute, so I’ve had to give up my work playing for weddings and parties.  The days when I’ve had to set aside my plans to rest and tend to pain.  It seems like, as the boundaries of my life grow smaller, I end up starting the grieving process over and over, for each new little thing.
  16. Something I never thought I could do with my illness that I did was: learn to advocate for myself with doctors and with my employer.
  17. The commercials about my illness: ROFL!  WHAT commercials?!?!?
  18. Something I really miss doing since I was diagnosed is: the interaction with my co-workers at the office.  It’s hard to have as little human contact as I do, since I’m working 8 hours a day from my desk at home.
  19. It was really hard to have to give up: MUSIC!  I so very much miss playing flute.
  20. A new hobby I have taken up since my diagnosis is: hmm, I’m not really sure about this one.  I’ve tried a couple of new things, and they ended up hurting and cramping my hands.  I spend more time in prayer now, and I try to spend more time giving intentional support to others.
  21. If I could have one day of feeling normal again I would: finish unpacking after this move, get rid of all the boxes, vacuum the carpets, make a really nice meal, spend time at my favorite museum, and make some time to snuggle with my husband in bed.  Or, you know, something like that.  🙂
  22. My illness has taught me: that having a chronic condition does not make me a weak person, that it’s important to educate myself on my condition and recent research, and that every one of us is broken in some way… even me.
  23. Want to know a secret? One thing people say that gets under my skin is: “You need to…” or “If you’d just…”  Trust me, I’ve done a lot of research into my condition and into possible treatments.  I know you’re trying to help me, but you sound so condescending, and you’re not giving me credit for trying anything that has a chance of working.  If there were a magic bullet, I would use it, but there’s not.
  24. But I love it when people: offer help in small ways.  Open the door for me.  Help me carry in the groceries.  Notice when I’m struggling and give me a hand.
  25. My favorite motto, scripture, quote that gets me through tough times is: He rescued me because he delighted in me. Psalm 18:19 It’s not just that God loves us all, but that God delights in us.  I think about what it feels like when I am delighted, and I am filled with warmth knowing that someone feels that same way about me.
  26. When someone is diagnosed I’d like to tell them: you will be okay.  You will walk through the valley of the shadow of death, but you’ll come out the other side stronger.  There are more of us, and we understand.  Read the Spoon Theory, and take it to heart.  Find support anywhere you can.
  27. Something that has surprised me about living with an illness is: I’m the same person I ever was.
  28. The nicest thing someone did for me when I wasn’t feeling well was: listen to me.  And take out the garbage.  🙂
  29. I’m involved with Invisible Illness Week because: so often, those with invisible illnesses are overlook, mistrusted, or written off as drama queens. It is important to help everyone understand — even ourselves! — that we want to work, we want to contribute, we want to do things.  We’re not just lazy bums who want to lie around all day and collect disability.  Sometimes, we just need to count our spoons and rest a little more.
  30. The fact that you read this list makes me feel: all warm and mushy inside, like a bowl of mashed potatoes and gravy.  Thank you for reading all the way to the end.  Next week, I hope maybe you’ll think about those of us who are invisibly ill.  And I hope you’ll give a hand to someone – anyone – that you encounter who needs a little help.

Love and blessings to you in your journey!

Expressing Gratitude

I stumbled on a blog this morning that I hadn’t read before – Marketing for Good (not Evil), which is now in my blogroll.  I found there a short post on Hire a Hero‘s effort to send one million thank-you emails to soldiers/sailors/airmen who are serving or have served.  The collection of thank-yous started on July 4th and will last until Veteran’s Day, but as of last week, they had only gotten 936 emails.

Please stop by Marketing for Good (not Evil) or directly to Hire a Hero to send an email to a servicemember to let them know that their work is appreciated.  Even if you disagree with our reasons for being in Iraq and/or Afghanistan, remember that for the most part, the servicemembers serving overseas are there on orders, and may feel exactly as you do.  Feel free to pass this message along, because our military folks deserve to know that we are thinking about them, praying for them, and wishing the very best for them.

Update: There is now a group on Facebook for those who have or plan to send a thank-you.  It’s called “One Thank-You of a Million” and I hope that if you’re on Facebook, you’ll consider joining!