What I Realized About Invisible Illnesses From Having a Daughter With POTS


I am fortunate to have two children to call my own; they fill my world with love and challenge me every day to be a better person and make this world a better place. My grown son is 24, determined to be independent, and he also has bipolar disorder. He never ceases to amaze me; he is off living his life, trying to make the best of the hand he was dealt. My teenage daughter is the child I never believed I would have. She was born after my neurologist informed me it would not be possible for me to have any more children, sandwiched between four miscarriages. My doctor was certain neither I nor a baby would survive a pregnancy.

You would never know those facts when you look at my daughter. To most people when you look at Jayde, you see a 15-year-old, beautiful, green-eyed, feisty redhead, only because this is what she chooses to show you. There are certain situations in life that no matter how hard you try, you can never prepare yourself for; sometimes you have no choice but to roll with it and hope for the best. When the waves of life knock you down, you rise; thankful you can stand once again. The term “invisible illness” is not foreign to our family. Yet for the last year every part of me has been in battle mode, on a mission to eradicate something most people cannot see and few are even aware exists. One of my least favorite phrases has become, “Seeing is believing.”

In March of 2016, Jayde was diagnosed with postural orthostatic tachycardia syndrome (POTS). Since that day, I have done what I believe most mothers in my position would do. I have spent countless hours researching POTS. I researched her cardiologist, investigating everything I could about him and his practice before our first visit to ensure she is receiving the best care possible. I researched this illness and all its components to ensure we have the most comprehensive understanding of what she is living with. I researched her medications and treatment plan, along with other possible treatments to ensure we are doing everything possible to help her. I read through numerous articles about other individuals diagnosed with POTS and how they cope, live and thrive, to ensure we are well-versed in everything POTS entails and in turn can help our daughter once again thrive. The symptoms of POTS are many and most are invisible. At the precise moment we believe we have a handle on one of her symptoms, a new one rears its head.

Her standard list of symptoms includes: dizziness, migraines, fainting, chest pain, elevated heart rate, heart palpitations, heat and cold intolerance, joint pain and inflammation, fatigue, nausea, vomiting, intestinal distress. There is not a great deal of rhyme or reason to her illness, but this is the nature of POTS. Because she struggled yesterday does not necessarily determine she will feel bad today, just as there is no guarantee tomorrow will be a good day because she feels good today. Every day is a new day, full of varying possibilities.

Several months ago my daughter screamed at me, “I do not know why you are trying so hard, there is never going to be a cure!” As difficult as it was to hear her scream those words, I recognized the truth between the lines. In a strange way, her words were comforting. Despite how sick she may be feeling, she has spent many months pretending this illness does not exist, pretending this was not happening to her. Sadly, it was then that I saw myself in her the most. My coping mechanism for a very long time was “fake it until you make it.” In that moment, the word “helpless” could not begin to describe how I felt.

Last summer, the week before high school began, we took our annual Hershey Park trip. Until this day occurred, I realized my daughter was not the only individual who had been living in denial. This routine trip would be the one scenario my research could not prepare me for. It did not warn me about the wave of emotions that would crash over me once we realized renting a wheelchair was the only means to continue our day at the park. Even though I was aware wheelchairs/scooters are commonly used by POTS patients and it was a possibility for her at some point in time, I was in denial that my daughter was one of those patients. Nothing could hold back the tears welling up in me as I watched her sit down in the wheelchair and her best friend push her into the park. Her friend, Allie, made light of the situation, bringing a smile to Jayde’s once somber face. Yet, through my hidden tears I wanted to scream, “This is nothing to laugh about!”

Then, instantaneously through no volition of my own, something in me switched. A strong urge came over me and I ran over, giving Allie a hug. I thanked her for all the love and support she has shown my daughter. She had quickly volunteered to be the designated chauffeur, pushing her up and down the many hills inside the park, never once complaining.

As we proceeded throughout our day I was sadly surprised and angered at the level of ignorance from so many strangers, primarily from adults, people who should have known better. There were many glaring stares and various comments, which were always in a snide tone and ranged from, “She doesn’t look sick.” “Why is she in that wheelchair?” The winner and my favorite for most original, “What does she need that wheelchair for? She looks fine to me; I should go steal it, I am tired of walking, too.”

As I looked back at the woman who made the last comment, with my sunglasses hiding my “I want to knock you upside your head” glare, my anger fumed, but I was exceedingly grateful Jayde was out of earshot. My extreme desire to reply to their ignorance was suppressed by the knowledge that my attention to their insensitivity would only serve to make my daughter feel worse. As my husband empathized with me, my daughter’s friend took it upon herself to be the protector; she made sure she met the glaring stares with her own glare, which seemed to cut down on the comments.

Regardless, of the intolerance and ignorance that surrounded us, we made the best of what could have been an unpleasant day and rolled with it, literally. It was an enlightening day for all of us; my husband, me, Jayde and her BFF. For me it served to reinforce the obvious: because you cannot see something, does not make it any less real. When you see a person pulling into the disabled spot, frustrating you because on the outside they appear healthy, remember you have no idea what it took for them to be able to leave their house today, or for that matter get out of bed.

 

Almost nine months have come and gone since our trip to Hershey Park and Jayde has 18 days remaining in her freshman year of high school. The many anxieties she had regarding being able to keep up with her work, the uncertainty of navigating the stairs (especially on her bad days), the fact that she is not always capable of doing the same things she once did, and the general fear of the unknown have all waned. Her childhood friends have difficulty understanding the reality of what she is experiencing. They cannot comprehend why she has changed, why she must cancel plans at the last minute, and why she still appears the same but is drastically different. Most of these friends have become more of acquaintances than friends.

Fortunately, she has found an eclectic group of new friends, each more diverse than the next; people who did not know her well, before the POTS diagnosis. They accept her limitations without judgment, always encouraging her to be her best self. Her dream is to be a photojournalist; she took journalism this year and had several pieces published in her school paper. Even without her newfound support system, we are grateful she has one special friend who supports her. A friend who is willing to carry her, or in this case push her when necessary, and help shield her from the ignorance of others… and for today that is enough.

Life and relationships are about quality, not quantity. It is not always something everyone else can see, but you know it is there, you know it is real and in the end that is all that matters.

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