March 20, 2013 in Living with Autoimmune Disease
Angie Alt is wife, mother, world traveler & blogger. She’s also a warrior in the autoimmunity war. Angie confronts three autoimmune disorders each day, including Celiac Disease, with powerful management techniques like AIPaleo & the Paleolithic lifestyle. She blogs regularly about the emotional side of tackling autoimmunity, adopting Paleo, and how it impacts her, her family, & their way of life. You can read more by Angela Alt at her blog and connect with her on Facebook.
The following is a very personal story, but I think it is a familiar one in the autoimmune community. After much discussion with my husband, I’ve decided to share here.
When it comes to dealing with the realities of an autoimmune disorder (or multiple disorders, as the case often is), I am a firm believer in a positive outlook. Basically, if I didn’t try to keep it “on the sunny side,” I’d be in trouble. An AIer makes alot of compromises and some of them are heartbreaking. It would just be endless depression if I focused on all that grief all the time.
That being said, recently I’ve had to look closely at some of those losses. I found myself in situations where I needed to articulate my emotions about them. It turned out to be a cathartic exercise and I thought I would write about it for The Paleo Mom, since it is such a big part of living with autoimmunity.
One of my greatest losses was fertility. I actually have a child. My daughter was born when I was in my early twenties. At the time I had no idea that my journey with autoimmunity had begun with the birth of my baby. I was even less aware that I would one day be facing secondary infertility. I’d just had a baby; naturally it did not occur to me that when I was ready to have my second, it just wouldn’t happen.
When that reality did sink in, three years after we started trying, I wrestled with so much pain. My husband and I had been so excited to add to our little family. There were times that disappointment felt like it had swallowed my heart. I didn’t dare walk by the baby clothes in a department store and I never allowed myself to think very long about my daughter without a sister or brother. Those tiny clothes or the idea of happy, giggling siblings . . . both constantly threatened to bring me to tears. I focused hard on how lucky I was to have my beautiful little girl and worked tirelessly not to let envy eat me up when all our friends started having babies and growing their families.
A lot of time has passed since the first glimmers of hope for a new baby. It’s been six years. Half of those years, I was so extremely ill that I could barely think about the dashed hope. Honestly, I often told myself that it was better . . . I could barely care for my own sick body, so it was better that I didn’t have an infant or a rambunctious toddler. Then I got a diagnosis and began the slow climb to health.
Knowing what caused my infertility hasn’t been much of a comfort. As I have learned more and more about autoimmunity, I have realized that despite my best efforts at healing, I might never regain fertility. It might be one of the things that have been irreversibly damaged by AI disease. Worse yet, pregnancy might even pose a huge risk for me, resulting in even greater autoimmune struggle.
I often think, if I could heal enough to recover fertility, I would just endure any autoimmune flares for the joy of a long wanted baby, but that would also mean undoing hard mental and emotional work my husband and I have done. We decided a few years ago, after I’d had laparoscopic surgery, that we were okay with our family being just the three of us. We have concentrated on raising an awesome kid and started to plan for being young empty nesters. Starting over with the sensitive ups and downs is not a simple decision now.
Sometimes my husband and I still talk about the names we had picked out in the beginning, when we thought it would happen easily. I’m not sure if we still love the names or if we have both decided, without any discussion, to stand by them loyally. We’ve accepted the infertility as the collateral damage of autoimmunity, but it seems a bit wrong to give up on the names for a little life we thought would be.
I know at times it seems unimaginable, but I have actually gained some incredible things in my life due to my multiple autoimmune diseases. Even with the gains, I think a big part of keeping a positive outlook is occasionally taking a minute to reflect on all that was compromised.