*Note: I was originally asked to write this piece for the Foundation for Sarcoidosis Research blog, in recognition of Chronic Pain Awareness Month.
When most people think of sarcoidosis,
what usually comes to mind is … ok, let’s start by correcting that – most people don’t ever think of
sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually
because someone they know has been diagnosed, they most likely think about
breathing problems. That makes sense,
since 90% of people with sarcoidosis have it in their lungs. This can lead to severe bouts of pneumonia,
pulmonary fibrosis (scarring), and more.
I do have sarcoidosis in my lungs
– that’s actually what helped lead to my diagnosis, after nearly 8 years of
trying to figure out what was wrong with me.
But (knock wood) my breathing issues are relatively minor. The most severe symptom I have, the one that
dozens of doctors and dozens of treatments have been unable to adequately
contain, is chronic
pain. Because sarcoidosis can
affect nearly any organ in the body and is frequently
accompanied by a number of comorbidities and/or complications, sarcoidosis
patients often live with pain in a variety of forms, severities, and parts of
the body.
For me, that literally means pain
from head to toe. I have been living
with a few different types of headaches for most of my life: these include tension
headaches since high school, migraines since college, and within the past
decade, sinus headaches from chronic sinusitis, and more headaches that come as a side effect of medication. I also have fibromyalgia, which is "characterized by widespread musculoskeletal pain," among other symptoms, and have suffered with painful endometriosis since college, and irritable bowel syndrome since long before they even called it IBS. Since sarcoidosis is an inflammatory disease,
the chronic inflammation causes painful arthritis, most often in my ankles,
knees, hips, and hands, as well as muscle aches most often in my neck, back,
and arms. As sarcoidosis affects my
nerves, the neuropathy causes a painful pins and needles feeling in my hands,
feet, and lower legs, a sharper pain that shoots down from my hips, and back
pain that can be completely incapacitating.
Even cutaneous (skin) sarcoidosis causes erythema nodosum, painful bumps
that develop on my legs. I am in pain
every minute of every day; it just varies in location and severity.
The pain can be
debilitating. There are days when I
can’t get out of bed for an hour after I wake up, and moments when I am
literally stopped in my tracks from a sudden burst of pain while I’m out. But the pain itself isn’t always the worst
part. Because pain is invisible,
sarcoidosis patients like me are often told that we don’t look sick. This is actually a double-edged sword,
though. While I’m glad I don’t typically
go around looking like an extra from The
Walking Dead, people often have difficulty believing what they cannot
see. Since we look fine, people assume that we are fine – and often do not fully understand or believe how much we
are truly suffering. This can lead to
all sorts of problems: with friends, when we have to cancel plans; with family,
when we have to miss special occasions; with employers, when we have to call in
sick so often; with Social Security, when we have to apply for Disability; even
with (some) doctors, when we try to get some much needed relief.
 |
| September is Chronic Pain Awareness Month |
That’s why Chronic Pain Awareness Month is
so important. First and foremost, it is
an opportunity for chronic pain patients to share our experiences, to help
educate not only those closest to us, but anyone who is willing to listen (or
read). The more we share each other’s
stories and raise awareness, the better we can support the next person who is
suffering from chronic pain and its societal consequences.
Speaking of the next person … that’s the other great
thing about Chronic Pain Awareness Month – sharing these stories helps to
connect us with the next person who is suffering. Living with chronic pain that affects every
aspect of our lives can be incredibly isolating. It’s easy to feel like we’re all alone, that
no one else understands what we’re going through. But when we raise awareness, each of us gets
to see that we are not alone. In fact, a
recent
study from the National Institutes of Health reports that 11% of Americans (that’s
around 25 million people) suffer from chronic pain. Through blogs, social media, patient-centered
organizations and support groups (both in person and online),
we find people we can turn to with questions, ideas, joys, and sorrows. We are no longer alone, or just one of 25
million suffering in silence. We are in
this together; we are the chronic pain
community.
Like what you see here at Float Like a Buttahfly?
Have a question? Contact me at floatlikeabuttahfly@gmail.com.
