The Art of Self Advocacy
By Dianne McTaggart Wall
For the past several years I have had the privilege of meeting a number of my fellow polio warriors by attending various PPS Zoom meetings available online. I will never forget my first meeting, and how it made me feel. I learned I wasn’t alone experiencing the physical challenges of post polio. I had similar feelings back in the 1990’s when I joined an in-person PPS support group. However, as the years went by, the group broke up due to difficulties in attending in-person meetings. Many members were facing health issues which affected driving as well as energy levels. Attending in person became impossible. They were dealing with the reality of aging with PPS. I was one of the youngest back then. Only in my late 30’s at the time, I was still driving and quite ambulatory. Several in the group were in their 70’s and 80’s. My acceptance of my new PPS diagnosis had not yet kicked in for me. I looked at the older members and thought I wouldn’t be like them. Some say ignorance is bliss, and maybe that was the gift I had being young and stupid. Looking back on those days, I realize now how much those fellow polio warriors are helping me today. They were my teachers of advocacy.
I learned the phrase “conserve to preserve” from them. They taught me to plan ahead by getting a scooter, even though I was still walking everywhere. I learned how facing possible realities was so important to keep my independence. They showed me how getting rid of my sedan for a van with a “curbsider” lift in the back, I could go everywhere with my scooter and not be so worn out. I realized my body was wearing out in a way friends my age didn’t have a clue about. My older PPS friends also taught me a HUGE lesson: It’s not only your friends who don’t understand, but many of your doctors and health-care providers don’t either. I learned I had to develop my own advocacy team - ME, MYSELF and I.
I started out by learning as much as I could about post polio. My support group gave me a package of information and resources, so I had places to start. I already had a good relationship with my family doctor, so I asked him for information he might know of. He admitted that I was his only PPS patient. He said he had other polio patients, but none of us were alike. He said, “Dianne, you’re the most unique patient yet, and the first post-polio patient I have ever treated.” I said, “Ok Doc, so you’re saying I’m the weirdest, but I am probably the most stubborn of them all, so will you learn along with me?” He absolutely agreed. I made an appointment for the local hospital’s PPS Clinic, which I had learned about from my support group. My family doctor had heard of it and encouraged me to go, but then he said, “Only if you share what you learn, so we can learn together.” We did just that, and I learned how to explain my case.
Unfortunately, post-polio clinics are very few and far between today. Many of us do not have doctors like my old family doctor either. Although I started my self-advocacy in the 1990’s, I still have to keep explaining what I have, why I can’t do certain things, why I am in a powerchair even though I can still walk, and how I do things that the doctors say I shouldn’t be medically able to do. Some of you might be thinking, “This self-advocacy isn’t easy.” Maybe you don’t know if you can do it. So where to start?
As I mentioned, Zoom meetings are a super source of information. Newsletters are great places too.
Newsletters like this one from Polio Survivors Serving Others (the PA Polio Network) and Polio Perspective are perfect examples - always chock-full of resources. The Editor of Polio Perspective, Mil Lill, is a resource in and of herself. The collective knowledge we all have from our survival journeys is like a huge lotto payout of information.
If you attend any Zoom meetings, listen to what has worked or hasn’t worked for people. It’s amazing how each of us were affected by a powerful virus, yet no two of us are the same. I never have had bracing, and yet I asked a group what I should expect if I end up needing a brace. My “polio leg” was acting like it wanted to call it quits, so my doctor gave me a prescription to a brace shop. Actually, my doctor first thought of physical therapy to see if my leg could build strength, and I was the one that advocated for a walking (gait) evaluation at the local orthotic/brace shop before seeing the physical therapist. He was all for that and said, “You know your body Dianne, so let’s start there. If their evaluation doesn’t improve your ankle pain and instability, then I will want you to try PT.” I agreed that was a good plan.
I work at building rapport with my doctors. It can be a true challenge sometimes, and the art of finesse at its finest, but it does come in handy when you wake up one morning and your ankle doesn’t want to work anymore. The Zoom group shared tips on AFO bracing and shoe buildup methods that might be considered. I learned so much. They even gave me questions to ask the orthotist, like if she had any experience with PPS clients, and if so, how much. I was really helped by that group, because one of the survivors was a retired physical therapist, and another survivor was a retired orthotist who still makes braces. I told you the information you get from knowing fellow warriors (which is a much better description than survivors), is a big lotto payout.
Once you start gathering research on PPS, try to apply it to your polio body.
Write down what you are experiencing; fatigue, new muscle weakness, joint instability and pain, to name only a few.
Next, make your list of questions for your doctor. Keep in mind that most doctors are under time restraints. Don’t go into the appointment with a file of papers you printed out from the internet. In fact, most doctors who see patients with that file, mark their patients’ file with a red-flag stating, Dr. Internet referral.
Choose three or four main questions from your list of symptoms and prioritize them according to how your pain level is, or how certain symptoms have stripped you of the ability to complete your own daily living skills. Keeping our independence is huge, and that independence has ripple effects on our quality of life.
On the day of your appointment, try to think as positively as you can. Some of us have reached a level of pain or hopelessness that we can’t be positive. That is totally valid. However, keeping your anger at bay is very important for an open dialogue with any doctor or medical provider. Try to remember doctors are people like we are, but with a boatload more knowledge of anatomy and physiology than most of us have. If you go in with a true effort to respectfully ask for medical advice they might have regarding your questions, and keep in mind they might not have much regarding your needs, then you have not wasted your time. You are now prepared to work with your next doctor or provider.
I guess that’s why I call it “the art of self-advocacy.” You may not like your first attempt, but to create your own artful masterpiece, you have to try again. Don’t give up. I really know how hard that can be.
I have walked out of doctor appointments confused, angry, exhausted and hopeless. Fortunately for me, I am a very stubborn person - the more roadblocks I run into, the more I work at getting around them. Knowing fellow polio warriors helps with that. We can be cheerleaders, friends, advisers, and even someone who kicks us in the rear to get off our pity potty. We are not alone. We have all been there and done that. Reach out for help and advice, and who knows, you might even love your Masterpiece.
Photos courtesy of Dianne McTaggart Wall. Diane is the author of: Somebody Told Me I Could: A Polio Survivor Who’s In It For The Long Haul.
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