Not what you鈥檇 expect to hear from someone who is immune compromised and living in anxiety over catching a 鈥渂ug鈥� that could subsequently trigger a life-threatening flare.
I鈥檝e had many people who I haven鈥檛 seen for a while approach me and tell me they鈥檙e thinking of me during this insane time. They worry how I鈥檓 processing the threat of COVID. My sense of ease around this pandemic throws them off. Let me explain (in lieu of PJ Day activities this year, here鈥檚 some personal perspective of an autoimmune in the age of COVID).
There are two discrete elements of life with autoimmune disease, and where and how it can 鈥渢ake you down,鈥� if you know what I mean. Pre-diagnosis, it is the actual disease process that can 鈥渢ake you down,鈥� but post diagnosis, the threat is mostly due to the immune suppressing medication we鈥檙e on in direct combination with 鈥渙ther people鈥檚 germs.鈥�
Aside from the initial onset, and one other flare, every other flare I have had and has been triggered by a flu picked up from someone else. What I (and my doc) call a flare is not always the same as what other people call a flare with other autoimmune diseases. In my world, a flare means a full reactivation of the disease process where organs can shut down and medical intervention is necessary. (It is not sore joints or aches and pains - that鈥檚 every single day, all the time, i.e. 鈥渢he new normal.鈥�) With each subsequent flare, the risks of permanent damage increase, the opportunity to bring it back down to semi-normal state of health decreases and everything becomes harder to manage. Meds lose efficacy, and management becomes trickier. Due to all of my flares, my lungs and kidneys aren鈥檛 what they used to be. My lungs have permanent damage and my oxygen saturation hangs out between 88 per cent and 94 per cent at my highest. But I still wear my mask and I am grateful for anyone/everyone else who does.
Thanks to COVID the entire world is now self aware (well, for the most part) of their own germ-carrying capabilities and we as a species are taking corrective actions. I鈥檓 so grateful for the masks, and the new paradigm where coming to work or to school while a 鈥渓ittle sick鈥� is a hero move no more. I got sick when my daughter was almost four-years old. I went through her entire elementary school career while pretty significantly immune compromised. I got a number of solid flares from the petri dish that we call school. I couldn鈥檛 comfort or console my sick kid because it put my own life in danger, and I had to make the choice of 鈥淒o I want to comfort her now?鈥� or 鈥淒o I want to see her grow up?鈥� Let me tell you, this is a horrible choice for a mother to make while her kid is sick. Wouldn鈥檛 wish it on my worst enemy.
I haven鈥檛 had a cold (touch wood) since COVID came around. I鈥檝e even heard rumours that we might have eliminated or at least greatly diminished some strains of the flu by being safe for COVID. It has also allowed for a little more compassion through understanding and personal experience. We had PJ Day here in Jasper to raise awareness for people suffering through autoimmune disease, hiding in their homes in PJs, avoiding other people鈥檚 germs, while looking normal to the rest of the world. Now the world spends a majority of time in their PJs (or comfy home clothes) just like people with autoimmune disease. The world gets the anxiety that comes with worrying about seemingly minor symptoms having the potential to blow up into a life threatening condition. People get the possibility of losing a friend or a loved one from what might start out as a simple cold. These are all fears I鈥檝e personally lived with since 2010, but COVID has changed that. Experience begets compassion.
The power of the moment, in my opinion, comes from the concept of caring for other people. We mask up not to protect ourselves, we mask to protect others. The power of the moment is the shift from a self serving perspective to a perspective of altruism and love for humanity rather than self. Despite the hardships, or perhaps even because of them, we are left better humans in the long run.
In closing, be nice. Be kind. Remember we are all going through our own personal battles but we live in a community that is unlike any other for its support and compassion. We all make mistakes. We all lose it sometimes. I know I do, but I hope that people I鈥檝e lost it on have the forgiveness in them that they hope is afforded to them when they reach their tipping point and make mistakes. We鈥檙e all humans trying to make it through this thing called life. Together is better than apart. As Charles Darwin said (paraphrasing here) co-operation is a species鈥� superpower (mentioned dozens of times in his thesis), not survival of the fittest (mentioned only twice).
Marta Rode,
Jasper, Alta.
