Living with an auto-immune disorder (a condition that causes one’s immune system to attack its own healthy tissue) of any sort is frustrating. It can be really hard to even pick up on your sickness, and when you do, it takes a hell of a long time to get a proper diagnosis. This is because many auto-immune disorders don’t come with a neon “Here I am!” sign. In fact, it took me years to learn what was actually wrong with me. Why should you care? Autoimmune diseases are common. They’re also weird. Sometimes you can feel simply incredible. Other times, you’re riddled with anxiety over what the future of the disease might look like.
Get ready for the lame stats: According to The American Autoimmune Related Diseases Association, autoimmune diseases affect an estimated 23.5 million Americans — most being women. There are about 80-100 different diseases that are known of, many of which are life-threatening and all of which are chronic. Autoimmune diseases affect women three times more than men, and have been among the top ten causes of all US deaths in women 65 and younger, according to Autoimmune Diseases: A Leading Cause of Death among Young and Middle-Aged Women in the United States. Worse, commonly used immunosuppressants (treatments) can lead to major side effects, which can make getting better (at least temporarily) really difficult.
People don’t often talk about autoimmune disorders, but I’d bet you know a few people with one — and if not, hi, my name is Lisa, and I’m one of them. I have Ankylosing spondylitis (don’t even try to pronounce it), which is a form of arthritis that causes inflammation of the spine and other joints, among other things. AS is thought to be largely genetic (thanks, Dad). Many people affected with AS have a gene that produces a genetic marker, which is a protein called HLA-B27. This little sucker isn’t the only culprit, though. There are others, which you can read about here.
AS causes inflammation throughout the body, so my joints always hurts and my eyes are randomly affected. Every few years, I’ve have a flare up that is like the Vesuvius of flare ups. In short, when it happens, it’s awful. My joints will ache and I’ll develop Uveitis, which causes my eye severe pain (I’m talking I’m going to DIE RIGHT NOW HOLY SHIT I WOULD RATHER HAVE A BABY pain), blood-red color, absolute inability to look at light (yes, I’ve worn a pirate patch) and blurry vision. To top it off, the steroid drops I use cause cataracts, which is apparently no big deal at all because I’m a sprightly 29 year old and should. not. have. cataracts. like. our. grandparents.
While I joke, the road hasn’t been easy. I’ve seen many doctors and have had to plead that I’m not, in fact, absolutely mental. I’ve had to beg doctors to believe that my knees wouldn’t ACTUALLY bend without immense pain, or that my eyes didn’t just have contact irritation. According at the Hospital for Special Surgery, I’m not alone in my thinking this: “Diagnosis can take several years, especially when symptoms are not taken seriously and/or the patient is made to feel by his or her friends or family that the symptoms are all “in one’s head,” contributing to patients feeling uncertain about their own symptoms and questioning their knowledge about their own bodies.”
The fact is, blood tests aren’t always yielding. It wasn’t until I had a CT scan (for an ovarian cyst) that the picture came together for me. This was the a-ha! moment; I found that the AS was the cause of a lot of the joint issues and subsequent eye problems. It also might be the reason why my lower back looks a tad bit more swollen than other peoples’.
I remember a time when I constantly had to bail on friends, ditch on a theatre performance group I was in, and even call out of work because my eyes were in such pain. I would sit in my bathtub crying with the door closed. My boyfriend would have to put a towel under the door so no light came in, and he’d sit there in the dark holding my hand. There were days when my joints would hurt so bad I’d limp to work. Despite the sort of fear and pain I was experiencing, people don’t see joint pain and they don’t understand that your eye isn’t just a little red.
The autoimmune disorder for many people is a silent attacker; for long stretches of time, people show no symptoms. Then, all of a sudden, a flare up will occur and friends and family are often left confused. Sleeplessness, irritation, multiple doctor visits and general frustration are all some of troubles we endure, and it’s hard to translate, “I’m just too exhausted” to friends who can’t see the problem, tangibly, in most cases. For me, I link people here: “Fatigue has been recognized as one of the major complaints among patients with inflammatory rheumatic diseases.” Boom.
Physical ailments are only one portion of the issue. The Hospital also said, “Many people with chronic autoimmune disease feel that there is a lack of understanding among those closest to them about their experiences and an unwillingness to learn more about their illness. This can create feelings of rejection, which can lead to increased feelings of isolation and loneliness.” If you know someone with an autoimmune disorder — which sounds vague enough to to reduce to ‘some random sickness’ — try to learn more about it. And, if you’re suffering from one, be sure to reach out to friends and family with your needs and limitations.
There’s no harm in telling those closest to you what you experience, just as there’s no reason why you shouldn’t read up on what someone you know might be going through.
For me, the disease hasn’t advanced enough to cause my life any major disruption, but I am always tired, my body feels 10 years older and being a writer (with, you know, joints in my hands) is an ironic, evil joke from God.
Just kidding, I’m an atheist. But still.