Thursday, April 24, 2014

It Could Be Worse

I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.
*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in for the first time will have that background info.  If you come back another day (and I hope you do), you can skip this part and jump straight to the day's post, below!

Today's assignment: Health Activist Choice Day 2.  Write about whatever you want today!
My Choice: It Could be Worse.

It could be worse.

Other people have it much harder. 

At least it’s not cancer.

People with autoimmune arthritis, fibromyalgia, and many other invisible or not-well-understood illnesses hear statements like these all the time.  Many of us say them to ourselves quite a bit, too … but it’s not always the best message to relay.  In fact, it can be downright hurtful.

For many years, I have lived with pain and fatigue on a daily basis.  I have headaches, back pain, muscle aches all over my body, and no explanation of why.  When my doctor finally said fibromyalgia (after years of being dismissed by doctors who didn’t see anything wrong), part of me was relieved – I knew it was an excruciating and complex condition with no cure, but at least it was an answer.  It wasn’t degenerative; it wasn’t fatal.   I should be grateful, right?

Before I’d gotten that diagnosis, I developed new symptoms.  My feet and ankles swelled up so much that I couldn’t wear any of my shoes (I had to buy a pair of moccasins in a larger size).  I had a tremendous amount of pain in my ankles and knees, and again, no explanation.  I didn’t fall.  I didn’t trip.  I didn’t stumble.  I didn’t twist.  It didn’t make any sense at all.  Again, part of me was grateful for this new symptom.  It was visible – there was no denying that something was wrong with me.  I was diagnosed with autoimmune arthritis, but the doctors were unable to specify which autoimmune arthritis disease it was for quite a while (they eventually decided I have an atypical form of Rheumatoid Arthritis).   Still, it was just arthritis.  It may be progressive and lead to deformity and disability, but it’s not going to kill me … so I should still feel lucky … right?

Statements like these are often well-intentioned.  We tell ourselves that things could be worse so that we will feel blessed, rather than wallow in self-pity.  Other people we know try to make us feel better by offering “at least it’s not [fill in the blank popular terminal disease], like [fill in the blank friend or relative] has."   We recognize that no matter how bad things may be, there is always someone who has it worse.  So we tell ourselves over and over again that we are lucky: It could be worse … but it’s not. We may even believe it once in a while.

To an extent, it's completely understandable.  Anyone who knows me (or reads my blog) knows that I am the first to find the silver lining, and always look for a reason to be grateful.  To an extent, that’s just having a positive outlook.  A while back, I spoke with my mom about how I was struggling with this idea.  I felt guilty for not having the perfect smile through the pain 24/7.  I spent my days (and many evenings) working for a cancer-fighting organization, so how dare I complain about arthritis or fibromyalgia?  I had lost relatives to cancer, and saw people affected by it every day.  My illnesses weren’t going to kill me; I had no right to complain.  I must be an awful, self-centered person to act like I got dealt a bad hand. 

Fortunately, my mom set me straight on that (somewhat).  She pointed out that my pain and suffering has nothing to do with anyone else’s … that I’m entitled to say “hey, this hurts” when it hurts, or even “man, this sucks” when I think about the situation.  Sure, she’s glad that what I have is not going to kill me … but she hates seeing her baby in pain every day, and the idea that I will likely have to suffer like this for decades to come absolutely does suck.  Acknowledging that doesn’t take anything away from people who have other diseases, and no one else’s problems can take away the fact that I have my own.  Sure, it’s best not to allow myself to be swallowed up by it, but I have every right to feel bad about feeling so bad.

What she said made complete sense, and deep down we all know she’s right.  Still, it’s just the opposite that can get reinforced when well-meaning friends or family members try to make us feel better.  When someone asks what’s wrong and we name a diagnosis that they don’t understand, the response of “it could be worse” can actually make us feel worse about ourselves.  Sure, friends are trying to lift our spirits, trying to help us see the bright side.  Unfortunately, what that type of response ends up doing is invalidating our feelings.  It suggests that we don't have the right to be upset, frustrated, or even angry that we've been diagnosed with life altering, potentially disabling, potentially disfiguring, diseases.  It implies that we should feel guilty for complaining to our friends when we're feeling bad.  By dismissing our diseases, and our feelings about them, it effectively dismisses us.

It's hard to get mad at friends for hurting our feelings like that when surely it was not their intent.  Autoimmune diseases are complicated: inconsistent, often invisible, with symptoms that overlap with many other conditions.  Doctors have difficulty diagnosing them, and we have difficulty explaining them ... so it follows that friends and family might have difficulty understanding them ... and us.  It is therefore our job to speak up for ourselves - to take the time to explain (however uncomfortable it may make us) what we are experiencing and how we are feeling ... not to everyone, but to the ones who are worth our time.  People who truly care about us want to make us feel better.  They will have no idea that their words can do just the opposite ... unless we tell them.

[This seemed like the perfect place to plug World Autoimmune Arthritis Day, coming up next month.  WAAD is a 47-hour online event (to cover May 20th in all time zones across the globe) designed for patients, caregivers, advocates, medical professionals, and more, to raise awareness and understanding about autoimmune arthritis diseases.]

**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!