Rare Parenting: Is My Facebook Profile My Identity? (Even When I Don’t Tag the Pictures of Me In the Wheelchair?)

By Elizabeth Paddock

It’s a blessing and a curse. It’s a network that allows people in and outside of the rare community to communicate–even when times are tough and getting social seems impossible. Seeing your Facebook profile can be a tool many cling to in order to preserve their communication, relationships and identity.

Personally, I have struggled with this immensely as my illness has progressed over the last few years. As my body and my mind have changed, becoming less and less reliable as my mast cells run amok through every system in my body, I am constantly wrestling with questions like who am I? Is the old me gone? Is it still a part of me? Can I ever integrate who I was with who I still want to be and who I am right now? Does my illness define me? How much of me does it define? Does it have to? What if I refuse to let it?

Before my illness began to progress rapidly, I was a very active mother. We traveled- during summer for months at a time- and explored anything and everything our sons showed an interest in. In the early stages of my illness I continued to coach gymnastics, even traveling across the country with my tiniest talented athletes. I used Facebook to stay connected- with family, with friends scattered across the country, with friends we made when we traveled, with my athletes as they grew up. And as moms do, I posted pictures to share with everyone- our sons skateboarding at Venice Beach, the trip we won to the Johnson Space Center to see a rocket launch from Kazakhstan, my gymnasts petting the camels at the national training center, our sons under their favorite Van Gogh painting at the art museum. We led a busy, active life and doing so actually defined much of who I was as a mother.

Our sons never had screen time as infants, toddlers, or preschoolers- we prided ourselves on keeping their eyes up and showing them the amazing things real life has to offer.   Teaching them to experience and love life is one of the most important aspects of my job as their mother.

But then my illness got significantly worse. My bad days began to come more frequently. The exhaustion pinned me down like a lead blanket for days, even weeks at a time. My average heart rate settled in the 150’s and I often risked passing out simply by being upright. I couldn’t stand for long periods of time- some days I couldn’t stand long enough to make dinner. Walking became a challenge. I could no longer attend my favorite yoga class on Tuesdays and Thursdays. Travel started making me sick. At first we thought I had the unfortunate luck of multiple food poisonings or a stomach flu that no one else in the family ever seemed to catch. As I got sicker, we began to connect the dots. Every time we traveled, I got ill. It wasn’t long before I was terrified to travel even short distances and I began to realize I was losing big pieces of my identity as a person and as a mother.

At first I continued to live my life on the good days- and Facebook allowed me to appear entirely normal. I liked that- as I’ve never been comfortable with others knowing I’m not feeling well. On my good days, I was still able to go to the art museum with my sons, even if my husband insisted he push me in a wheelchair to make sure the walking didn’t trigger another episode. I shared photos of our sons sketching beneath their favorite paintings- but never, never of the wheelchair. Facebook allowed me to celebrate these little victories and I became increasingly desperate to hold on to those. Life with a rare and chronic illness can strip you to the core- stealing away the very things that make you human. But one thing you can’t allow it to take away is your hope. And for me, my hope is in the good moments. The good hours. The good days. I have to seize them when I can, even if I know I’ll pay for it after. Because if I give up on the little victories, I’ll quickly lose all hope… and hope is the only thing that keeps me alive sometimes. Hope for better days. Hope that someday someone will find a cure. Hope that someday I’ll be able to live the life I want to live.

So sometimes I struggle with the “double” life I lead. It is a deliberate choice I make. Others may choose differently, but we are all left to make the decision that best supports our own physical and mental health. I choose not to share much about my illness on social media. Aside from the fact that no one needs a running dialogue of my gastrointestinal problems or blistering rashes, I simply can’t allow my illness to define me. Accepting that it is and forever will be a huge part of me has been difficult enough. But it is not all of me. I will never let it be. Even if I have more bad moments than good, I will always and forever hold on to the good. Those are the moments I identify with, no matter how few and far between they may. Those are the moments I choose to focus on. The moments I choose to share. Those are the moments I live for.

About Elizabeth

Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her health. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.