How to Be Your Own Best Advocate With Long COVID

One of the most valuable lessons I’ve learned this past year during my battle with long COVID and pericarditis is that if we want to get answers in the healthcare system, we have to be our own best advocates. It’s nearly impossible to get immediate appointments, especially with specialists, and doctors are so overwhelmed by patients they barely have any time to really dig deep. (Of course, there are always exceptions).

Our healthcare system has always frustrated the crap out of me, but I have learned ways that I, as the patient, can help make the whole experience better and more helpful. I’ve been to four different ERs, seen more than a dozen specialists, and had two hospital admissions over the past eight months, so I’ve definitely learned a lot!

The tool I rely on most is having a written list of all my concerns and questions so that I don’t leave an appointment and realize I had failed to ask something. It’s especially helpful for questions that, to me, seem trivial or are embarrassing. If I have a list ready in my hand, all I have to do is read it. It also helps me to word things the way I want, making explanations clearer for my doctor because I’ve had time to think about what I want to say and how to say it. When the doctor sees me sitting there with a sheet of paper in my hand, they know I’m prepared and mean business, and I don’t get flustered trying to remember important details.

Keeping a journal of symptoms has been invaluable. I’m so grateful I have kept a detailed running log for the past few years that details how I feel on every run, because to be honest, my memory has been terrible since I’ve been on steroids for over seven months. With a journal in hand, I’ve been able to go back and see exactly when certain symptoms started, how long they lasted, identify patterns and share much more accurate details than if I just relied on memory. It’s been a major factor in helping me piece together this complicated puzzle and present a better, more detailed picture of what’s been going on.

Sometimes, the smallest detail could be the missing link, so having it all laid out in detail has been invaluable to me. I jot down things like “Felt very sluggish. Pain in left side. Out of breath. Heart rate high.” Once I realized something was wrong, I forced myself to write a quick summary before bed each night of how I felt throughout the day and I no longer limited my notes to only running. It empowers me because I have proof for the doctor that I’m not exaggerating or making things up. Once, an obviously inconvenienced ER doctor entered the room, and the first thing out of his mouth was to remind me that I had already been there for the same symptoms and rudely asked me what my deal was! He proceeded to brush me off and send me home. Later, I found out I had fluid around my heart that grew to a dangerous level. That really pissed me and my husband off!

Know what’s normal for your body. Pay attention to it and write down any concerns you have plus baseline information. The last time I went to the ER, my resting heart rate was 80 and my blood pressure was normal. The nurse remarked that everything was fine. However, for me, that number was very high and one of the symptoms of the pericarditis returning. Typically my heart rate is 52, so when I spoke up and informed her of that, then she was concerned. Now, I always mention right away that I’m a runner, have a low resting heart rate, and my blood pressure is typically on the low side. Just because a number falls within a normal range doesn’t necessarily mean it’s normal for that patient.

Bring someone with you for backup. Thankfully my husband has been with me for every ER trip and several aftercare appointments for moral support. Many times he’s remembered things my doctor said after we left that I had totally forgotten. (Hence now I take notes when I’m on my own.) He’s also had my back when a doctor or nurse looks at me like I’m “crazy.” He assured them I am not a complainer and he can confirm what I am saying. He also won’t take no for an answer, so when I’ve been in pain, he advocates for me and has fought to get me quicker appointments, when typically I would’ve given up. I’ve learned that if we keep pressing and insisting, there’s usually a way to get seen.

Do your research and be well-informed.  I doubt most doctors are thrilled with a know-it-all patient. But there’s a difference between being prepared and knowledgeable and being a know-it-all. I found when I’ve done my research and written down legitimate concerns, doctors respect that I really care about what goes into my body. They understand that I want to function as part of a team and not just someone who will nod my head and be passive.

The most difficult lesson I’ve learned is that sometimes the doctors really don’t have an answer and the process of recovery requires patience. It’s kind of hard to accept when I’m the type of person who needs an answer and gets very impatient. But the majority of medical professionals I have encountered over the past eight months (and man, have I seen my fair share), have been extremely caring and genuinely want to help. Some things are just a complex puzzle, especially with something new like long COVID, and they’re learning about as we go.

The tools I mentioned have helped me navigate the process and be a better patient and team player. I still get very frustrated at times, but the more I learn to advocate for myself, the more success I have in dealing with the medical system. Obviously, our healthcare system is broken as insurance companies dictate much of our care (don’t even get me started on that topic!) and doctors are flooded with a ridiculous amount of patients each day. But in the end, we have to fight for ourselves and demand to be heard and taken seriously (and trust me, I know it’s much easier said than done, especially when we are sick and in pain). Hopefully, when we do make progress, we can help those around us who are having difficulty being heard.