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!
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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.
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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.
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.
