I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?