“I was walking down a NYC sidewalk when I suddenly felt like my body was struck by lightning. My legs grew heavier with each step. All I could think was, ‘Something is very wrong.’ Luckily, I had just passed a walk-in clinic, so I immediately turned around to get a check-up. As far as I knew, I was healthy. Nothing like this had ever happened before. The clinic doctor immediately called an ambulance and I was taken to the nearest hospital.
Two years later, and far too many appointments to count, I received a diagnosis…and it is a complicated one. I have Ehlers-Danlos Syndrome (hypermobile type). There are many comorbities common with this genetic disorder including small fiber neuropathy, POTS (postural orthostatic tachycardia syndrome), severe degenerative disc disease, and dystonia just to name a few.
I’m a 45-year-old mom to an incredibly active 7-year-old living in NYC. Prior to becoming a mother, I managed a design firm and advertising agency for 13 years. Once my little girl was born, I took some time off, but not for long.
At just 9 months old, my daughter was running and whipping around the house. I found myself saying ‘no’ far too often to her, so I decided to get outside and explore. I love photography and Instagram became my hobby. This evolved into me starting a blog about our adventures together. Soon after, I began working for PR companies and traveling to their events, properties, and even other countries. My young daughter and I were world travelers and she thrived in this environment.
I fairly quickly learned that traveling with a child was really hard work. However, I found blogging about it very fulfilling. I’d sort through photos of the activities we did at the end of each adventure and write tips for other parents who were considering visiting where we had been. Blogging helped me turn the part of parenting that can be filled with frustration into a time of reflection with each post I wrote. I loved every minute of it. It helped to distract from the pain.
The truth is, I was exhausted. I had severe back pain starting around 6 months post-partum. I managed my symptoms with pain medication to keep up with life. And although it worked, it didn’t work for long. By the time my daughter was 5, I was unable to hide my suffering and no longer able to keep up. She was in kindergarten at this point, so we lightened up the adventures and I sometimes found time to rest. But even with rest, I really started to struggle with my symptoms and felt inadequate as a mom, especially the mom I used to be.
I could no longer lift her up without my shoulders dislocating or give her piggyback rides without serious pain and consequences. Even lying in bed with her became difficult and still is. She likes to cuddle, but I cannot lay on my side without my ribs and shoulder dislocating. It hurts to have her lay in bed with my arm around her, but I do it anyway and secretly hope she moves away.
She still wants the physical relationship we once had and it saddens me that I can no longer do this the same way. She frequently asks me, ‘Momma, when are you going to get better?’ I have to lie and tell her I’m working with doctors to get stronger. I don’t have the guts to tell her there is no cure.
Looking back, I had a lot of symptoms of my illness throughout my life, I just never connected the dots. I always thought I was just ‘double jointed’. In reality, I was actually experiencing symptoms of Ehlers-Danlos Syndrome (EDS). EDS is a genetic defect in collagen; I was born with this. Since collagen supports the skin, bones, blood vessels, and many other organs, I feel chronic pain and fatigue everywhere. The scariest part of this illness as a mother is that I may have passed the defective gene to my daughter. There is a 50% chance of her getting it. I feel tremendous anxiety and guilt knowing this.
Every time I hyper-extended a joint in my life, I was stretching my tendons and damaging them. My faulty collagen is unable to repair my tendons, and over time they’ve become like frayed rubber bands. Whenever I watch my daughter on the playground like a clinician, watching the way her joints move, I wonder if her elbows are hyper-extending or if her shoulders are dislocating.
Nonetheless, I have not stopped her from being active. I will not unless I have medical evidence to do so. I don’t want my fear to disrupt her childhood, yet I want to protect her the best I can. For her young age, she has showed great talent in gymnastics. Fortunately, her focus has recently shifted to dance, which is not as hard on the joints. I was so relieved to see her make this change.
My spine resembles one of a 90-year-old with severe degenerative disc disease and causes nerve pain and cervical instability. I now spend four times a week in therapy to help manage my symptoms. Sadly, I feel like my life went from living to spending every waking breath managing my body.
EDS is a spectrum illness and, since it’s genetic, there is no cure. Some people are mildly affected while others are severely compromised, even needing feeding tubes and weekly infusions. I fall somewhere in the middle. Some days, I only need braces to keep my joints in place but other days I need the aid of a wheelchair.
I do what I can to make the best of my situation.
Every day, I have to take multiple medications to minimize symptoms in order to function. My daughter watches me struggle and sometimes copies my motions, as kids do. She sees me take medications which really concerns me – I often think to myself I’m showing her how to take drugs, even though I try to be discreet.
Having an invisible disease is a strange beast. No one can see from the outside what is going on inside me. In addition to being invisible (much of the time), this is a rare disease. The most discriminating people I’ve encountered so far have been doctors. I’ve been told my symptoms are anxiety-related countless times. I now bring my boyfriend into new doctor appointments just to have a male in the room to validate that what I am saying is accurate. I find this very demeaning, but it’s the truth.
Apart from the medical field not being knowledgeable about this rare disease, therefore often being discriminating and not helpful, my friends and even strangers have been incredibly supportive. I am lucky that the spirit of New York is so strong in helping others and I have benefited from this greatly.
As a mom with EDS, it is truly a double-edged sword. Genetic counseling is advised if planning to start a family. I did not know I had this condition when I got pregnant. I fear every day that I have passed this horrible disease onto my daughter. We are scheduled for genetic testing for her this summer. On the other hand, ignorance is bliss…my daughter gives me life. I can’t imagine not being her mother – she is my greatest love.
Since my symptoms didn’t manifest until my daughter was older, she remembers me being more physically active. With a pouty face, she often tells me, ‘I miss the way you used to be.’ Hearing this is always crushing. Sadly, her school is not accessible, so I cannot make it up the four flights of stairs to her classroom anymore. Today is Family Friday at her school and I could not attend. So, her class took a ‘community walk’ afterwards by my apartment and I was able to go outside and say hi to everyone. Having a disability as a mom is tough, but there are beautiful moments like these that keep me going. I feel lucky to have many of these.
Going public about my illness was something I felt I had to do to help me accept it. I was having a really hard time processing such a huge change in my life with an uncertain future. What surprised me was how many friends and acquaintances reached out, telling me about their medical mysteries and tests they’re undergoing. Or private friends confiding in me of their medical struggles and illnesses they are battling. I can say with clarity that I have the most meaningful relationships in my life right now and being a mother with a disability is a big part of that. Illness is no blessing, but it has opened the door for these beautiful connections.”
This story was submitted to Love What Matters by Estée Pouleris of Family Road Traveled. You can follow her journey on her YouTube here and Instagram here. Submit your own journey here and be sure to subscribe to our free email newsletter for our best stories.
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