X

Making Peace with My Chronic Illness

Coping-With-Chronic-Illness

After months of abnormal pain and exhaustion, Anna was diagnosed with arthritis. The illness brought physical limitations that have forced her to allow others to help her. The loss of independence hasn’t been easy, but she wonders here if it has also been a gift in some ways. 

One morning I woke up, and realized I was dreading going into the bathroom to brush my teeth. The problem was that I kept getting stuck in the bathroom. Something was wrong with my hands, and I’d been ignoring it — but yesterday, it had taken me three tries to turn the knob to get out. 

I’d already been making all kinds of subconscious adjustments. I had a special way of holding the toothbrush, so it wouldn’t put any pressure on this or that joint. I was walking on my heels, because my feet couldn’t take my own weight. And the exhaustion — as a mom, being tired is nothing new, but I could hardly face taking the kids to the park by myself. Was that supposed to be normal? 

After some very uncomfortable hours spent inside a couple of MRI machines, I came home diagnosed with rheumatoid arthritis (RA).

RA isn’t curable. My immune system is attacking my joints, and if I don’t inject myself regularly with shockingly expensive lab-created living antibodies, my joints will deteriorate. Think of the knobby-fingered, bent-over old witch you see on Halloween — that’s what a person looks like who hasn’t gotten treatment for RA. 

I am lucky. The first treatment we tried has worked, for now, and there are programs to make it affordable. I feel okay. 

Still, it’s been humiliating. 

For one, I felt like a problem to be solved — suddenly, every decision revolved around the impact my illness was having on our family life. Our calendar was covered with red ink to note all of my appointments for bloodwork, various specialists, consultations, and follow-ups. Every conversation my husband and I had was about me, me, me: Was my body going to be able to bear more children? That road trip we were looking forward to — was that still possible? My pipe-dream of moving to the country and raising chickens? Cross that one off the list. 

The hardest part is that when I’m in pain, I have to ask for help:

“Can you make the bed? It sounds silly, but the blankets were too heavy for me.” 

“Can we buy new plates? Ours hurt my hands to lift.” 

“Will you bring the baby inside? I can’t manage the car seat.”

Each request takes that big, gaping need — the one I spend so much time ignoring and wishing away — and forces it into the open. Asking for help is like saying, “Let’s focus on how weak I am.” 

I hate myself when I need extra help. I feel like a failure when I have to face up to what I can’t do. I have internalized the message that being strong means being totally independent, that weakness of body (or mind) is tantamount to weakness of character. 

In a strange way, this illness has come with a gift: the opportunity to un-learn these implicit beliefs. It has forced me to internalize the truth that there’s nothing disgraceful about needing help.

If we are lucky, you and I will be old one day — we’ll be 80 years old, and then 90. We won’t reach that age preserving total independence. We began life totally dependent, didn’t we? We may as well learn to accept our limitations now because they are built into the human experience. 

And maybe that’s a feature, not a bug. Autonomy is an illusion that prevents us from the learning and growth that come with dependence. Accepting our limitations sooner rather than later might save us a lot of unnecessary self-directed anger and frustration. 

My chronic illness — all of my limitations and weaknesses, really — are humiliating. If I could wish them away, I would. I can’t snap my fingers and heal my body, but I can do something better. I can accept myself as I am, limitations and all, and use this new sense of humiliation like a roadmap to lead me to a better sense of my own dignity — a dignity that isn’t grounded in my ability. 

And when I am 90, God-willing, I hope that I’ll finally believe that I’m no less worthy of love — from others or even myself — because I’m in need. 

Be in the know with Grotto

X