Life as I knew it changed when I got sick in 2011. I was diagnosed with my first autoimmune disease, rheumatoid arthritis, and then with fibromyalgia, a chronic pain disorder, within a few months. My diseases hit me hard and fast. Within a few short months my life had been flipped upside down due to pain, stiffness, inflammation, and intense fatigue.
When I say flipped upside down, I mean I had to switch careers, figure out what I could and could not do, make time for naps in the afternoon, plan rest before and after I did simple activity, such as go to the grocery story, and more. There was nothing in my life that was not being touched by these diseases.
Fast forward to today and I have a growing list of complicated chronic illnesses, including axial spondyloarthritis, Raynaud’s syndrome, neuropathy, hypothyroidism, and more.
Yin and Yang in the Time of Coronavirus
I intensely believe in the concept of yin and yang: that there are two sides — pros and cons — to every situation. Getting sick forced me to change careers, but I now love my new career path and my current job in a way I never did before. Advocating for my health helped to get me where I am today. Being in pain all the time is so hard and I would not wish it on anyone. I am in pain 24/7. There is never a moment where I am not in pain. But my health issues, including the amount of pain I endure, have taught me some important lessons that are helping me even more right now as I learn to adjust to life during the coronavirus pandemic.
I got rid of toxic people in my life because I just don’t have the energy or mental strength to deal with it. This has forced me to protect my mental health because toxic people make my condition worse due to stress and anxiety.
I have learned to listen to my body in ways that were not even possible before. I always expected to suck it up and get through whatever was happening. Now I do body scans, pay attention to trends in terms of my needs, and am high alert for triggers for my flares.
I can add so many more lessons to this list because I am constantly trying to learn and grow as a person. I am trying to understand and let the difficult things I experience mold me into something stronger and more powerful.
This is why — just a few weeks after the coronavirus pandemic has turned my life upside down all over again — I believe that managing my multiple chronic illnesses over the past decade has prepared me surprisingly well for this new era of life during COVID-19.
I’m used to facing unpleasant truths
For example, I have had to face the truth about my health, my abilities, what I need, and what I want to accomplish despite my limitations. COVID-19 is here. It is easily transmitted. It has a higher infectious and mortality rate than other common viruses like the flu. This virus is dangerous and efforts by various local, state, and federal governing bodies to flatten the curve are warranted.
So, I am facing this truth now: The world as we know it has changed and we do not know when or if it will ever go back to the way it was before. That is a fact. I cannot do anything about it. I cannot change the fact that the risk to myself or any of the other #HighRiskCovid19 folks out there is in our communities. It just is. Social distancing, quarantine, and hand washing before and after everything are just part of what will help all of us survive.
Facing my health problems honestly and realistically over the years has helped me confront unpleasant truths on a daily basis. Right now, there are many people who are still downplaying risks or creating an alternate reality because they do not know how to handle change the way those of us battling chronic illness can.
I’m used to being housebound for long periods during flares
I have flares from multiple diseases. And those diseases often bounce off each other. For example, my rheumatoid arthritis will flare and trigger my fibromyalgia. My RA will then trigger my spondylitis. Pretty soon they are all bouncing off each other like balls in a racquetball court.
Because of this, I often have to stay housebound during flares for days at a time. I usually crash pretty hard on the weekends to catch up on sleep and try to recover from my efforts of keeping a regular work schedule during the week.
I have gathered an arsenal of comforting projects that help pass the time and distract me. I have small little projects I can work on without getting up from my bed. If I am struggling but am well enough to sit up in bed, I have my yarn nearby to work on crochet projects a few stitches at a time. Since my boyfriend and I began to self-quarantine, I have ordered and started working on Lego projects. Those are meditative for me to help me pass the time and keep from obsessing about what is happening. It is very stress-relieving for me to create in any way that I can. And I listen to what my body can and cannot do. So, I work a little at a time until I get them done.
I regularly carry my iPad around with me like it’s an extra appendage. When I am struggling, I sit in bed and sketch about how I am feeling. If I cannot sketch, I play games and binge my favorite shows until I feel better, and then I sketch. I try to express what is happening to my body to help me better process the pain. Creating art helps me capture my reality and work through the struggle I have on a daily basis. Since I am quarantined, I have sketch pads stashed all over the place. If I end up on the couch for a while I can just reach over and grab a sketchbook to create. Currently, I am engaged in a #QuarantineArtChallenge with my dear friend and fellow patient advocate Jed Finley. We take turns giving each other prompts and our deadline is usually within a few days. That helps us stay occupied and not get bored or run out of ideas. I also created a new Facebook profile filter for people with chronic illness.
I know how to communicate virtually and avoid feeling lonely
Since I have had to miss out on so many events over the years due to physical symptoms like pain and fatigue, I am used to reaching out to others when I am feeling lonely. I have a set of people I am constantly communicating with through my phone and via social media to alleviate that angst that can build up after being inside for days at a time. I just had a video chat with my fellow #HighRiskCovid19 co-founders to check in and keep up with our mental health.
We had some other topics on the agenda, but we spent the first 30 minutes showing each other our pets, making jokes, sharing artwork on our walls, and more. We also check in with each other in a special group on Twitter regularly. That helps us tremendously as COVID-19 becomes more rampant and connected to us personally, causing spikes in fear and anxiety.
I am going to be reaching out shortly to some other friends to create a video chat social hour where my boyfriend can be involved too. We hope to drink some wine, chat, and maybe even play some games.
I know how to watch for mental health red flags
Since my body has forced me to better understand what it needs, my emotional and mental health are part of that equation too. I have learned over the years that my mental health is just as important to my existence as my medication for my diseases. I have learned to speak out, ask for what I need, and pay attention to the signals I am getting.
For example, I just had a conversation about being quarantined with my boyfriend and how I feel like I have no privacy or personal time. We chatted about what we both need and discussed a plan to give each other some space. I have since walked the dog by myself (not close to anyone at all, trust me) and been able to be outside alone. He has also gone for walks to give me time to be inside alone as well. We are working on ways to honor what each other needs in a clearer way now.
I’m trained to interpret medical information and use it to make better decisions about my care
On top of this, when no one around me thought that the coronavirus was going to be a real risk to us here in the U.S., I knew otherwise. For the last three years I have been a Patient Governor with the Global Healthy Living Foundation (GHLF) and its patient research registry ArthritisPower.
I have aided in the development of research studies, discussed the patient perspective about surveys, suggested ideas, and helped GHLF and CreakyJoints in many ways to create a more patient-centric existence for us all. As part of my Patient Governor responsibilities, I attended the 2019 annual meeting of the American College of Rheumatology, where I learned even more about interpreting scientific research.
These years of experience have helped me understand more clearly early on what the risk to patients from COVID-19 was going to be. I sifted through articles about what happened in Wuhan, China, how quickly the virus spread, and who was highest at risk and why. I shared peer-reviewed journal studies and articles with fellow patient advocates who are even more knowledgeable than I am. I didn’t rely on media hype for information. I sought scientific facts.
Because I was armed with information early on, I felt like I was ahead of the curve in accepting our new normal. I began preparing earlier. I got a doctor’s note to begin working from home before my whole building went remote.
As a patient who has had to advocate for almost a decade to give myself a fair and better life in the workplace and in health care settings, I actually feel prepared and powerful in this time when others are so fearful.
So many abled and healthy folks are scared. They don’t know how to handle the switch to being inside all the time. They don’t know how to distance themselves or protect themselves correctly. I’ve been on immunosuppressing medications for a long time — DMARDs for nine years; biologics for seven. My whole life is centered around social distancing because I have a higher risk for upper respiratory infections due to the biologics, prednisone, and several other medications I take regularly. I didn’t have to run out and buy overpriced face masks because I’ve been using them regularly for years now.
I wrote all of this to illustrate this for other people with chronic conditions similar to mine. You are more prepared and more powerful than you think you are. As a patient or a caregiver, you have skills that are needed right now. You know how to social distance and protect yourself and your loved ones. You know the value of protecting your mental health just like I do.
We are going to get through this together — and come out the other side stronger than when we came in.
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