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.