When You Have An Illness Few People Understand

“At least it’s not cancer.”

This is what well-meaning people said when I was diagnosed with rheumatoid arthritis at the end of last year. “At least it’s not cancer” rings through my head every time I want to cry because we’re going to have to adjust my medications to something stronger, some cancer-causing drug or a chemo drug that will make my hair fall out and make me really nauseous. I think about how I don’t have cancer when I consider how our goal, according to my doctor, is to keep my hands from gnarling into small, unusable oak branches.

“At least it’s not cancer.”

There’s a lot of truth to that. I’m not suffering the pain and debilitation suffered by someone with cancer. I am truly grateful that it isn’t cancer.

However, telling me, “at least it’s not cancer” isn’t helpful because then I feel like I should only be grateful for my disease. It’s saying that my grief and anger at this disease is vulgar and unwarranted.

It’s not cancer, but it is a disease. It’s a disease that means my immune system is compromised; I get to look forward to getting sick more often. I have a young son who is about to start attending daycare, which, if you’ve ever been a child or met a child, you know means he’ll be carting home a grab bag of other people’s germs and sharing them with his mom.

It’s not a cancerous disease, but it is damaging. Having rheumatoid arthritis increases my chance of heart disease and stroke. And rheumatoid arthritis, like any autoimmune disease, thrashes through my body, assaulting my muscles and joints. My muscles and joints ache at the start of the day and ache at the end of the day so that the two times I see my husband, in the morning and in the evening, are marked by my complaints and my limping, shuffling gait, and my desire to just go to sleep after I put the baby down for the night. The middle of the day, before the lifting and playing that I do with my infant son has begun to wear down my system, is a bonus time, but it’s not free of pain. Sometimes, I just lie down on the floor and feel my back sigh in relief, letting my son crawl all over me and giggle away my discomfort. Then I feel guilty for just lying there and not playing with him, so I roll back up with a moan and grab a toy and play through.

It’s not cancer, but I have to take cancer drugs. We’re now trying to ease me off of prednisone and keep me on Plaquenil in an attempt to avoid the harsher drugs for as long as possible. Each time I decrease my prednisone by one milligram, I feel the loss of that milligram in my bones. My back cries. My arms feel like rubber bands pulled too tight, too often. I’m reluctant to admit that Plaquenil may not be enough. I wonder what level of pain is acceptable. What level of pain am I just going to have to live with from now on?

I want to cry and be angry. I want to talk about my loss of freedom to do whatever I want without worrying about the pain I’m going to suffer later for pushing my body past its new, pitifully small boundaries. I want to say it’s unfair that I have to deal with chemo drugs that have so many side effects, that I have to consider whether it’s worth it to try drugs that have been proven to cause cancer.

At the same time, I am truly thankful that it isn’t worse than it is. Some people deal with RA and lupus and fibromyalgia together in a gift basket of pain. I’m lucky that isn’t the case with me. I am thankful that I don’t have cancer. I’m thankful that I don’t have a million other worse diseases. I’m truly thankful for what I don’t have.

But I do have rheumatoid arthritis and chronic pain and limitations I didn’t have before. And I’m trying to cope with that. And, frankly, it sucks.

I need it to be OK to grieve. I need my closest friends to hold my hand and hug me and agree with me that it does suck. Don’t tell me “At least it’s not cancer.” Just tell me you love me and you’re here for me. That’s all I really need.

Shelley Lavett Decker is a Southern girl transplanted to the Valley of the Sun in Arizona. She was diagnosed with RA in 2013 and is still trying to understand what this means to her life. Meanwhile, she enjoys teaching college freshmen how to write without emoticons, spending time with her very supportive and insane family, and writing whenever there’s time.

Featured image via Shutterstock