A letter from a mother
by Alison Armstrong
I'm writing to you as a mother, caregiver, patient, and Patient Revolution Fellow. My family has been through several harrowing medical experiences over the last few years and, unfortunately, endured the worst of industrialized healthcare far too often. We are grateful for the careful and kind care that we eventually gained access to, but it was hard to come by.
Since 2017, my daughter has had multiple chronic illnesses. Those of us with them know how flawed the healthcare system is in dealing with poorly understood and complex chronic illnesses. Sometimes it’s hard to know if the doctors just want to hand us off to the next healthcare specialist so they don’t have to deal with the time consuming, complicated, and uncertain nature of these conditions. Or, as I now have learned, some care deeply but are limited in time and mental capacity by external forces beyond their control that impact their ability to truly care.
In January of 2023 our daughter developed a new pain syndrome so serious she wasn’t sure she could continue to endure it. The pain was as extreme as it gets and relentless. She was losing consciousness regularly because the syndrome stopped her breathing from muscle spasms in the neck and she was wasting away before our eyes from inability to eat or digest food. You can imagine how frustrating and scary all of that is for a parent. We saw multiple doctors over the next 10 months who each saw her for 15-20 minutes only to say, “there’s nothing I can do” or “there’s nothing wrong.” Even worse, she had to undergo a couple of very painful and UNNECESSARY procedures by doctors who didn’t do their due diligence to determine if the procedures were necessary–again due to rushed appointments. Another doctor prescribed (without an exam at all) a medication for anxiety that was actually harmful to her pain condition and made it worse.
We went to over 10 doctors in several parts of the country searching for answers only to experience more of the same. My wake up call and awareness about how poorly she was being cared for came when we finally found a team and a doctor who actually engaged in healthCARE. The doctor ordered appropriate tests before we arrived (simple things like MRIs, bloodwork, x rays and an EMG), spent an HOUR to make sure she got a THOROUGH history, and conducted A COMPLETE PHYSICAL EXAM. I emphasize this because a telltale indicator of her condition was obvious to the naked eye. If any one of the many doctors she had already seen HAD LOOKED AT HER BODY in any of the appointments, they likely could have diagnosed it too. She had a very winged scapula. It was so obvious that when this caring physician told me to look at my daughter’s back, I said “what’s wrong with her scapula?” That simple observation, combined with the testing done, helped us understand that she had an autoimmune condition that is/was destroying the myelin on her nerves in her back. This led to a cascade of other problems, including terrible muscle spasms, muscle degeneration, and horrible nerve pain. One of the worst parts of all of this is that her condition is progressive and led to much greater pain, muscle atrophy, and nerve damage because of the delayed diagnosis. This is just ONE of the many experiences we have had with poor care when trying to find answers for her various conditions.
For a long time, I blamed myself for our inability to navigate the "system", especially on behalf of our daughter. I worried that maybe we were doing something wrong, or we were “expecting too much.” And then we had the good fortune to find careful and kind care at a major medical center through a series of personal contacts, which ultimately led us to The Patient Revolution.
Now I know. I know that it is possible to find care that focuses on the person behind the disease. I know that it is the system that is broken and not me. Most importantly, I know that, if you are reading this story, you agree that healthcare has to change. We need to lift each other up and demand a better kind of care.
We are lucky to have The Patient Revolution to provide the inspiration, ideas, and community we need to do so.