The Baby That Never Arrived

This month I decided to write about a really personal, but I think familiar, issue for those of us coping with autoimmune disease . . . infertility. Infertility and autoimmunity often go together.  Oddly, most of my doctors over the years (and I’ve been to A LOT of doctors) never bothered to say much, if anything, to me about this link.  When my husband and I sought the help of fertility specialists they told us, after very little investigating, that the cause of our infertility was unknown.  I now know that it was caused by a combination of Endometriosis and Celiac Disease and that secondary infertility is especially linked with autoimmunity. One fertility center’s own literature states, “. . . we have come to see infertility as a, fairly typical, early symptom of abnormal female autoimmune function.”  So maybe none of these specialists ever talk to each other, but if this is fairly common knowledge, why don’t they immediately evaluate women presenting with infertility for autoimmune disorders?  Basically, I think infertility is the elephant in the autoimmune room and I think we should talk more about the elephant.In an effort to help others coping with infertility navigate that delicate and enormous (you know, like an elephant) conversation, I decided to write a “guide” of sorts.  I hope that being so open about what I have learned over the past 12 years of facing infertility will benefit others.

Talking To Your Doctor:
The general rule of thumb is if you are under 35, have been actively trying for over a year and have not become pregnant, seek medical help.  I agree with this, unless you already have an autoimmune diagnosis or suspect autoimmunity.  If that is the case, start earlier with your doctors.  Make sure your doctor understands the implications of autoimmunity on fertility.  If they aren’t educated on the subject, find another doctor.  It may still be possible to get pregnant, but knowing about the extra complications of autoimmune disease will make it easier to reach the goal.

If the cause of your infertility is unknown, don’t just skip ahead to treatments, even if that is how your insurance works.  Work with your primary care doctor or other specialists to explore autoimmune possibilities first.  After the first year, both my husband and I were asking the doctors,”Could this be a sign of other health problems?”As time went on and I became more sick, we were sure the infertility was linked, but didn’t understand how.  As my husband says, “It went beyond us having a baby.  I wanted a healthy wife.  I wanted the woman I loved to feel better.”

Talking With Yourself:
After we knew that we were definitely dealing with infertility, we went through a tough mourning period.  During that time I had to look inside and be honest about my feelings.  I was in pain.  It felt like such a basic dream had been shattered.  I was shocked, because I had a little girl, I thought adding to my family would just happen.  I felt guilty, both about my daughter not having a sibling and about my husband not having a biological child.  And I was angry, as each and every month just became another deep disappointment.  I actually spent a lot of time with those internal conversations, as did my husband.  Let yourself have the internal dialogue about your loss.

Talking With Your Partner:
I had a long talk with my husband before writing this post and we sort of charted out how we have dealt with not being able to have a baby.  It isn’t like we followed a step-by-step process, but in hindsight there was a “method to our madness.”  It went like this:

1)  We shared our sorrow.  We took time, frequently in the beginning, to talk about our heartbreak, to cry, and to support each other.  We were really open about the internal conversations we’d been having up to that point.
2)  We owned the infertility as a joint problem.  Even after we knew that it was my diseases, we looked at the infertility as a shared consequence of my autoimmunity.  We never blamed each other.
3)  We talked about our options.  Obviously, it is really important to decide how to approach the options together.  Once we had solidly made decisions about each of the potential paths, it took some huge burdens off our shoulders.
4)  We established a time frame.  We decided not to undergo the intense and expensive fertility treatments and also, after a lot of discussion, not to adopt.  This meant we had to decide how long to “try.”  Our time frame ended up corresponding to surgery for Endometriosis.  I think it can be really important for a couple (if they have made similar choices), to have an “end point.”  It takes the pressure off and allows you to move beyond grieving.  For us, that was three years, for others it may be much longer or much shorter.
5)  We started to make plans for a “different” kind of life. My husband and I will only be in our early 40’s when we are empty-nesters.  I think it helped to start focusing on how we would spend that time, instead of always focusing on not having a baby.  We’ve even begun to really look forward to what our relationship will be like with our daughter as she enters adulthood.  As my husband says, “We will be kid free, but plus a friend.  We can do tons of awesome things with her that we could not do if we were still raising other children.”  Beginning to make “other” plans, also freed us up to count all the blessings we have with an “only,” one of the big ones being all the resources both tangible and intangible we can devote to her.

Talking With Friends and Family:
What I want to say here is one of the most important things I want to convey in this blog.  Be as open as you are capable of about your struggles with infertility, whether you know the causes or not.  Do it even if others are not always comfortable with it.  We share in the celebration of new pregnancies, the births of new babies, and the growing of families.  We have baby showers, we gather to meet new arrivals, and we enjoy first birthdays with happy parents.  I think it is only natural that we should also, on occasion, share grief.

Honestly, most people are very poor at knowing how to approach this with an infertile couple.  Sometimes, couples dealing with secondary infertility are in a particularly awful “no man’s land,” where they are expected to “just be happy” with the child they have and yet can not share in the joy of other expanding families.  There are bound to be moments of resentment, work through them with your partner, and then find ways to both share in the happiness of fertile friends and family members, while still acknowledging your own hurts.  Once you’re there, talk about it with others.  Maybe your openness will help them know how to offer you support?

If you are experiencing secondary infertility, consider ways of opening up with your child.  Find age and emotionally appropriate ways to talk about what is happening.  He or she is an important person in the conversation and might have feelings of their own about the situation.

Infertility is a huge, sensitive topic and when combined with autoimmune disease the emotional roller coaster can be extreme.  I really believe it is a topic that requires openness for healing.  It isn’t the enormity of the elephant in the room that is so overwhelming, as much as it is the tininess of the baby that never arrived.

About Angie Alt

Angie Alt is a co-founder here at Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with celiac disease, endometriosis, and lichen sclerosis; one nutritious step at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She is a Certified Health Coach through the Institute for Integrative Nutrition, Nutritional Therapy Consultant through The Nutritional Therapy Association and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol and The Autoimmune Wellness Handbook. You can also find her on Instagram.

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