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Stronger Together: Collectively Braving the Fears of Auto-Immune Disease

Stronger Together: Collectively Braving the Fears of Auto-Immune Disease www.herviewfromhome.com
Written by Monica Gri

The fears of parenting set in the moment you hear your child’s first cry. The typical worries cross our minds. We worry about being horrible parents, we worry about not feeding them well enough, we worry that we are just not going to do it right. For some of us, we worry about what our least desirable genes hold for our future, and we worry about passing these genes on to our children. While the exact cause of auto-immune disease is not known, there is growing evidence demonstrating that genetics play a role in an individual’s tendency to develop an autoimmune disease.

My husband and I were each diagnosed with two different auto-immune disorders when we reached our thirties. We have both run the gamut of medications that must be administered unpleasantly, steroid shots, uncomfortable medical procedures, multiple colonoscopies, and most recently, a total joint replacement. Through it all, the disease is never cured. It is always still there. While medications work to treat symptoms, flare ups often occur and the disease remains a nagging thorn in our side. This is the reality of auto-immune disease. For lack of better words, it completely sucks.

My husband was diagnosed with Psoriatic Arthritis, an autoimmune disease, around the time our daughter was six months old. Like many auto-immune disorders, the disease began mild and quickly progressed. For a man who once ran miles a day and played soccer religiously, being diagnosed with Psoriatic Arthritis was heartbreaking. As his symptoms increased, my stress levels did too which awoke my sleeping monster called Ulcerative Colitis.

As we watched our baby grow happily, we voiced our concerns to each other that she may one day inherit our genetic flaws. This after all, is the blessing and curse of all offspring. You are your parent’s genes—the good and the bad.

We also discussed what these disorders meant for our future and we talked about our frustrations in trying to accept why this was happening to us. Was this our new norm? Would our symptoms get worse as we age? Why are our bodies failing us? Why us? When one of us was having a bad day, the other was there to remind them that we were in this together, never alone. We would celebrate good days together, and cry at the end of bad ones. Regardless of the day and the pain of our symptoms, we always knew that home meant comfort.

As our baby grew, my symptoms stabilized, but my husband’s grew severe to the point of excruciating pain. His disease latched onto one hip and completely degenerated its cartilage in a matter of six months causing him to lose the ability to walk with both legs. We were informed that he would need a total hip replacement as soon as possible. The fears of parenting were never as loud as they were during that time.

One month before my husband’s surgery, Hurricane Harvey devastated our city along with much of Texas’s Gulf Coast. We were evacuated from our home on a kayak by brave Houston firefighters and we watched from a hotel room as our city sank under water. We were active participants in our city’s recovery which is still ongoing, and had the privilege of witnessing firsthand the love and strength that poured out from a community that lost everything. The effort was collective and those who were affected by Harvey felt a bit less alone. There was a parallel I began to see between the hurricane that ravaged our city and the disease which was ravaging our household. In the face of hardship, we are stronger together.

When my husband awoke from his surgery, and as he began to recover and rebuild at the same time our city did, we quickly realized our community was lifting our family up too. Friends and family sent us messages of encouragement, messages of love, stories of their own struggles, meals upon amazing meals, beautiful and generous gifts, treats, and surprises for our little girl who was having trouble adapting to so much change. In a time of immense stress and pain, we felt shrouded in warmth and love. During a time in which my husband was scared and I was so exhausted I thought I wouldn’t be able to make it through the day, these people gave us the strength and courage to keep going.

It was then that a shift happened and the fear we carried about our future and passing along our disorders to our child began to gradually lessen. We began to understand that regardless of what the outcome is, together we will continue to endure and overcome as we have thus far, and no disease will define our daughter or our family. In the face of hardship, we will practice being brave, and we will teach her how to prosper despite the obstacles she will face. We will show her it is ok to be afraid, but will also show her how to practice courage. We will teach her that fear is powerful and should be acknowledged, not ignored. We will teach her how to accept discomfort and how to sit with discomfort, and we will show her that she will never have to do it alone. We will always be there to feel the discomfort with her.

Above all else, we will teach her that we are stronger together than we are alone, and together, we will get through it all. She will learn all of this, because she will have witnessed her community, the friends and family that surround her, and the two people who love her the most do this with each other, and she will learn from their example.

About the author

Monica Gri

Monica Gri is a proud native Houstonian. She studied psychology as an undergraduate and later pursued a career in law. Despite her many roles, her favorite job is being a wife and mother. Outside of work, she enjoys spending time with her family, being outside, practicing yoga, reading, and writing. Her passion for writing has moved her to begin the early stages of launching her website, Here, You Are Home. Her hope is that her website will provide a safe, comforting, and non-judgmental space for parents who aspire to raise loving children while navigating the daily challenges of everyday life.