I am thrilled to welcome my friend Hannah Vaughn Setzer as a guest blogger today. We haven’t known each other long, but almost as soon as we met, we knew we had many things in common: love of social media, interest in fitness, and a desire to help people understand challenges people face in navigating the world of health care. Thank you, Hannah, I hope you’ll share more with us in the future.
This is a tough one. I’m not a parent. I believe with my whole heart that my parents and doctors made the best decisions they could at the time with the information they knew when I was growing up. Were some of those decisions not successful? Yes. Did some inflict more pain and hardship upon me? Yes. Am I resentful or angered by that? No.
I imagine it is the hardest thing on earth to see your child, or parent if you’re an adult caregiver, in pain and suffering and have to make decisions that medical professionals are presenting you. I’m in the in-between stage. I’m a fully functioning adult who gets to be my own medical advocate (while still calling my mama to help me remember facts or process things) for the first real time in my life. This is liberating and also can be scary.
Several years ago I took my health into my own hands in the biggest way I probably ever will. Up until age 23 I was on canned, genetically made, pre-packaged formula for people with feeding tubes or other medical needs. Doctors advised my parents to put me on this from a very young age and admittedly it kept me alive. I was able to function and go to public school and participate in activities and camps and be social. It also made me incredibly sick often. We didn’t know it was the cause but it was certainly a catalyst for many infections and illnesses I had for my first 23 years.
With the encouragement of some friends, when I was 23 I went off the formula. I started blending my own foods and trying to eat healthier real foods. It was a steep learning curve. My parents were not happy. I lost a lot of weight at a very rapid pace until we figured out a blended diet that worked for me to sustain my body. Five years later I am healthier than I’ve ever been, I eat real food, and instead of getting sick monthly I’ve been sick four times in those five years.
While I don’t get sick often anymore, it is still very difficult when I do get sick. Medical students don’t study people like me in medical school. Your run-of-the-mill family doctor doesn’t know what to do with me when I am sick. I have to be my own advocate and tell them what is wrong, and tell them the treatment solution. I know my body well enough after 28 years to know what works and doesn’t work. I know exactly how it feels when I get an infection. I know what antibiotics are successful and which aren’t. I’m no longer a child. It’s no longer a guessing game. The scary part is over. My parents and doctors did all the hard work of diagnosing and figuring out what works best and now that I’m the advocate I just have to relay the message.
Being a self-advocate doesn’t only apply to medical situations. I have to advocate for myself in new work environments. All throughout school my parents and I had to advocate for me. This world wasn’t built for people with disabilities or medical conditions, therefore the advocating never stops. I’m a Disability Rights Advocate and I teach people every day how to advocate for themselves. This ranges from parking lot access, asserting their rights to an interpreter, getting a driver’s license, and accessing their own middle school building.
It can be exhausting to have to fight every day for basic access and rights that the rest of the world is afforded, but the alternative is a life that may be sorely lacking in basic human necessities. Every time we advocate and educate new people and providers we aren’t just helping ourselves we are helping everyone, those behind and ahead of us to change the world. It can seem overwhelming and exhausting and pointless, but I’m here to promise you that it is not.
Keep fighting the good fight!
A Note from Paula
I love the fact that the picture Hannah sent includes a print that says, “We can do hard things.” I first learned about Hannah and Feeding Tube Fitness when she went to visit my November 28 birthday-mate Lydia in the hospital. Lydia currently has a feeding tube (learn more about her/share support at her Facebook page or her GoFundMe), and Hannah wrote this in the Instagram caption:
I want her to grow up in a world where she sees and knows people like her who are pursuing all their dreams, kicking butt and taking names. I want her to know that she can do anything she wants in life, I want her to see athletes, models, and girls like her running the dang world.
Hannah and I ended up at the topic of medical advocacy for a variety of reasons. She has had her own road to take regarding learning to advocate for herself. Lydia’s parents have had a crash course in communicating Lydia’s needs to her medical professionals. I struggled to figure out what would help my mom (when quite a few things seemed to be geared toward the hospital’s expediency) during her final illness and to be assertive enough to make sure my father-in-law’s well-being was taken care of during his final years, not to mention my own adventures in electrophysiology.
If there’s one thing I know, it’s that medical advocacy (for ourselves and for those we love) is a “hard thing.” Thank you, Hannah, for sharing your story. It gives us all emotional ammunition for that “good fight.”
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.