Invisible Illness Awareness Week

2009 Invisible Illness Awareness WeekLast week, I blogged a little about Invisible Illness Awareness Week, which begins today with online conferences and hundreds of bloggers taking time today to increase awareness.

I begin this post, still unsure how I want to use it.  I don’t want to complain about the issues I struggle with, and I don’t want to take a tone of anger or frustration.   I think I’ll just start with some plain old facts, and see where that takes me.

  • My diagnosis, Ehlers-Danlos Syndrome, has a prevalence rate of about 1 in 5,000 people.  This means that about 61,000 people in the US have EDS, and about 1.4 million people in the world.
  • Fibromyalgia is experienced in about 2% of the population, which is about 6.1 million people in the US and about 140 million people worldwide.
  • The prevalence rate for Rheumatoid Arthritis is about 1% of the population, which is about 3 million people in the US and about 70 million people worldwide.
  • Regular old Osteoarthritis affects about 27 million people in the US, about 9% of the population, and is the cause of 25% of visits to primary care physicians in the US.  If that 9% rate is globally applicable, this means that about 630 million people suffer from osteoarthritis.
  • About 265,000 people in the US currently have Leukemia, with over 44,000 new cases being diagnosed each year.   Deaths from leukemia, worldwide, account for about 3% of the 7 million deaths due to all forms of cancers.
  • About 8% to 12% of all people in the world will suffer at least one episode of Major Depression during their lives (in North America, about 17%).  And contrary to what some may believe, Depression can be fatal.  On average, 3.4% of depressed people commit suicide.  So of people currently alive in the US and Canada, about 57.5 million have or will have an episode of Depression.  And of those people, 2 million will die of it.  Worldwide, about 700 million people have or will have Depression, and about 24 million of those will commit suicide.
  • The prevalence of Herpes in the US is estimated at about 1 in 5 adults, occurring in about 45 million individuals over the age of 12.
  • Prevalence of Lupus varies around the world, from 40 per 100,000 people in Europe to 159 per 100,000 people of Africa or Caribbean descent.  About 1 million people currently have Lupus in the US.
  • Nobody is quite sure what the prevalence rate is for Asperger Syndrome, but one conservative estimate places it at 0.26 per 1,000 people.  This is about 79,000 people in the US, and 1.8 million people worldwide.  One estimate at the high end is 4.84 per 1,000 people, which would be about 1.4 million people in the US, and 34 million people worldwide.  The real numbers probably lie somewhere between the two.

Those numbers are pretty huge, aren’t they?  Hundreds of millions of people in the world, millions of deaths, and this is just a small sampling of chronic, invisible illnesses.  The people who struggle with these illnesses are all around us… and we don’t know who is struggling with an invisible illness and who is not.  There are estimates that suggest nearly half of all individuals have a chronic, invisible illness, though they may not all know it or have a firm diagnosis.  Half.  One out of two.  50%.  That’s nearly 152 million people in the US, nearly 3.5 billion people in the world.  That’s why Rest Ministries sponsors Invisible Illness Awareness Week every year.  That’s why I’m blogging today.

The next time you see someone who looks just fine getting out of their car in a handicapped spot, think about these numbers.  They may be part of that almost-50% who have an invisible illness.  Instead of becoming angry and confronting them, consider these facts, and maybe try a different approach.  Perhaps it’s time to try a smile of encouragement, or maybe asking them if they need help.

The next time a family member or co-worker tells you they’re feeling bad, try thinking before you say something like But you look good today! or But you don’t look sick! Be ready to listen, without making judgments, just being fully present in the moment and hearing what they have to say.  What you hear may surprise you.

Or, perhaps, if you are the one in two who struggles with the illness, remember that you are not alone.  Struggling with the symptoms and effects of your illness does not automatically make you lazy or weak or demanding or incompetent or any of that nonsense.  It just means you have to work a little harder than the other 50% of people.  No, it’s not fair, but it’s the life we have to live.  When you need to rest, rest.  When you need medications or ice or heat or a brace or a cane or a wheelchair, use them.   And try to remember that when people say thoughtless things to us, it isn’t necessarily a sign that they don’t care about us or don’t want us to feel well.  It just means that they don’t know what to say, in the face of our struggles and pain.

Now, go check out the schedule of virtual conferences this week — I’m sure you’ll find something there for you, or for someone you love.  You’ll see these…

  • Understanding how we uniquely deal with difficulties in life
  • Finding health insurance with a pre-existing condition
  • Super foods for super-natural health
  • Hearts of gratitude and joy
  • Coping with chronic illness in your marriage
  • Coping with crises on top of chronic illness
  • How to start a business when you are chronically ill
  • It’s okay to say NO: Building healthy boundaries
  • Parenting when you are chronically ill
  • Simplifying your home and housework
  • Real talk about men and chronic illness
  • Finding the job you desire and can do
  • When your child is chronically ill
  • Managing college with a chronic illness
  • Helping others understand your pain
  • Applying and winning disability assistance when you are chronically ill
  • Being a teenager with a chronic illness
  • Surgery preparation.

That’s quite a line-up, isn’t it?  I’m looking forward to several of these seminars, and I hope you’ll listen to at least one of them.

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!