How Advocating for Myself Helped me Navigate Life with Achondroplasia
“There is beauty to be found in the pain. Life is brutal, but it’s also beautiful. Life is Brutiful.” – Glennon Doyle
Living with achondroplasia, the most common form of dwarfism or skeletal dysplasia, can be a “brutiful” thing.
I’ve been an advocate for myself and other people living with skeletal dysplasia since I was eight years old – starting when my best friend and I gave a presentation to our third-grade class about what it was like as a little girl living with achondroplasia. It was the first time I spoke in front of a large audience and it was so exciting. I don’t know that little Kristen exactly understood the impact her words would have, but something about giving that presentation clicked with me. That was the first step on my lifelong advocacy journey.
Advocating for myself has become a tool for navigating my health, but finding the strength to speak up can be difficult when you’re grappling with pain and uncertainty. When I struggle to find my voice, I remember that we only have ourselves for the rest of our lives – that’s the only guarantee, and we have to do whatever it takes to make life worth living.
Do you want to talk about rock bottom? I’ve been there. And I’m grateful for where this path has taken me.
In 2015 I lost sensation from my waist down. I was diagnosed with spinal stenosis by a nurse practitioner who sent me to physical therapy without a second thought. By then I could barely walk due to the excruciating pain. I was getting worse and knew something had to be done.
The skeletal dysplasia community is a special one. Through my previous advocacy efforts, I had connections with quite a few individuals who had also undergone limb-lengthening surgery and were familiar with the medical complications that can arise due to dwarfism.
One of these connections happened to reach out to me during this challenging time in my life and asked me how I was doing. I gave her an honest answer and learned she was currently at the Paley Orthopedic & Spine Institute in West Palm Beach, FL, where a new spine surgeon from New York, Dr. David Feldman, had recently joined the practice. I made an appointment immediately.
When I met Dr. Feldman, he got right to the point. He looked me in the eyes and stated the obvious: “You’re in big trouble.” I required emergency surgery and underwent a nine-level spinal fusion in May 2016. I had residual paralysis because my spinal cord was so compressed. I relearned how to walk and wound up having the fusion extended down another level due to further instability in my spine. One surgery turned into several, over the course of 4 years, as my body struggled to regain strength after my spinal stenosis.
Resisting to accept my reality, I continued to sink deeper into depression until I hit a mental and physical low I didn’t know was possible. During a routine appointment with Dr. Feldman, he came into the office where I was sitting down with my back brace on and he positioned me so that I was looking him in the eyes. He motioned to me and solemnly said, “This is not okay. This is not the woman I met a few years ago. I understand that you are going through a lot, but we need to make sure you’re taking care of yourself. We’re not going to give up on you, so you can’t give up on yourself.” I will never forget that moment.
It was hard, and I knew I had to keep going and do whatever it took to get back on my feet — physically and mentally.
As kids, when we would fall down, get hurt, and begin to cry, we were shushed and told that everything was fine. The sad, scary, and angry feelings weren’t openly accepted or almost deemed as ‘bad.’ I was taught to suppress these feelings, which is what I did, out of fear that I was the cause of someone else’s hurt. I remember being out in public with my mom when I was a kid and when someone stared at me, I would see my mom become visibly upset. You don’t know any better when you’re that age, so I immediately assumed her anger and sadness were my fault. I thought I was the problem, so I acted as if nothing was wrong. I suppressed everything I felt to try to comfort those around me. Living with a disability can be so challenging, especially for a child who’s just starting to understand that they’re different.
As a woman living in the face of adversity, I encourage parents of kids with disabilities to give their children the space to talk about everything. It’s important to talk to kids about all of their emotions — the good, the bad, the ugly, all of it. In my role as a patient advocate, I’ve had some amazing conversations with kiddos and teenagers, conversations I never would have had at their age. It makes my heart feel so big when they feel comfortable enough to talk and be their authentic selves.
While I find being open and honest in a public way to be an effective form of advocacy, I know it can be scary to accept that vulnerability. You don’t have to share your story publicly if you’re not comfortable. Find someone you can speak openly with, like a therapist, and share your sad, scary, and angry feelings with them. That’s also a way to advocate for yourself while getting someone else’s input and advice. I can’t emphasize enough how important it is to get those feelings out.
There’s nothing easy about living with a disability. But it’s doable and you can lead an amazing life. It’s OK to give the aspects that are difficult attention, though. I didn’t learn this lesson until I was in my late 20s and life sort of forced me to be more honest and open, not only about living with achondroplasia but how it made me feel. After completely uprooting my life and losing my independence in more ways than one, in the middle of my most recent medical issues – I needed help.
Trust me, I get it, asking for help can be one of the hardest things we ever do, but it doesn’t make you weak. It makes you strong. I’m finally OK with allowing myself to cry when things get hard, even if that means that my frustration hits in the grocery store checkout line. Crying is a natural reaction. It’s not meant to be suppressed. You have to allow yourself and those around you to feel these emotions. This is an aspect of living in the face of adversity.
It’s been eight years since I lost mobility below my waist and experienced debilitating pain. Eight years since I hit rock bottom. And I wouldn’t be where I am today without the support of my doctors, therapists, family, friends, and community. Now, I am a published author, a patient advocate for a group of doctors at the Paley Orthopedic and Spine Institute, I work closely with some pharmaceutical companies as an advocate, and I’m a consultant for the skeletal dysplasia division of the MAGIC Foundation.
Every day I use my experience and knowledge to help other patients, families, and the rest of our community members through their own journeys with skeletal dysplasias. Never in a million years would I have ever imagined that I’d be where I am today. I’m doing my dream job and giving back to my community, which is what has carried me, especially over the last eight years.
I used to ask myself if eight-year-old Kristen would be proud of where I am today. I’m honestly so proud and a little blown away of how far I’ve come in my recovery and thus my advocacy journey. And I know eight-year-old Kristen would be too.