Guest Post by Angie Alt: The Compromises of Autoimmune Disease

March 20, 2013 in Categories: by

Print Friendly

Angie AltAngie 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.

Comments

Thanks so much for sharing this Angie! As you said, it is hard to face the losses that we’ve experienced from an AI. It’s hard for me to think about/admit what I’ve lost in time, career, family and socially, but your post is helping me face how important it is to recognize the losses in order to keep going and stay positive. Also it is only fair to ourselves to give ourselves credit for experiencing and getting through the losses.

Thank you for sharing your personal story with us, Angie! I’m sorry to hear about your struggles, but happy to know that you are healing.
I have only one child (by choice), and I think three is a lovely number. ;)

Thank you for having the courage to share this aspect of having an auto-immune disease. I had secondary infertility too and I think it was the most difficult part of having Celiac Disease to accept. Addressing the issues that are deeper than skin rashes and gut pain are a very important part of healing and taking the next steps in healing. Wishing you peace.

Thanks so much for reading Leanna. And I agree, further understanding my secondary infertility after I got my Celiac diagnosis was not easy, it was one of the bigger hurdles of the diagnosis. Little by little, being forward about it has helped the healing. Best to you.

I had to leave a comment to thank you for sharing your struggles. I managed 4 pregnancies and deliveries before getting an AI diagnosis. The last babe was hard-won (10 weeks in hospital on bedrest and then a premature delivery). I had always expected to have a large family with many roly poly children, so four feels small to me. I love my babes, but not having more was (and is) a loss to me.

Where I appreciate your perspective is that I often find myself thinking it would be “easier” if I had fewer kiddos. It takes so much of my limited energy just to make it through the day, and I miss out on so many of their milestones because I’m sick. It is easy to give in to thoughts that tell me I’d have fewer losses or be better off without them. Thank you for reminding me to be always-thankful for what I’ve been given.

I too am struggling with secondary infertility due to an autoimmune disease (after hoping for 3-4 children), so much of what you shared here really resonated with me. I find focusing on the gratitude and joy of mothering the amazing child I do have helps me stay grounded and not resentful of my oh-so-fertile friends. It’s a daily challenge, and I guess this is the stuff life is made of – it’s up to us how to respond. Thank you for your encouragement; somehow it helps knowing someone else knows what this feels like.

I am an infertility nurse and stumbled upon your blog. I am so sorry to hear of your struggles. Having more insight into my patients types of emotions and difficulties helps me be a better nurse and comfort for them. I will forward on this blog/info as you can be a support for them. Again, thank you for sharing.

Thank you Angie for openly sharing your struggles. My husband and I are struggling as well with secondary infertility. After taking a huge leap and reversing his vasectomy (ouch) about 6 months prior to my Celiac diagnosis. We have 5 kiddos between the 2 of us, but that longing for one that is shared, one that is from the two of us is still there. I didn’t even know that the term “secondary infertility” existed. Your struggles resonated with me, as they are so close to the emotions and ups and downs we are going through. Thank you

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Sign up for my FREE weekly newsletter!

Stay up-to-date, never miss a post, and get exclusive content and coupons! Sign up now and you'll get a FREE Paleo Quick-Start Guide!

We will never share your information with anyone.