When someone we know is sick, we tend to tell them to “get well soon.” These words seem polite and social. We say them to anyone who is sick. It has always seemed like the correct phrase to use.
But why do those three polite, socially acceptable words feel like a knife going through me?
I have eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis. It is an autoimmune condition that affects both small and medium blood vessels. EGPA can damage your heart, kidneys, lungs, nerves, eyes, digestive tract, and even your brain. There is no cure. I will not be able to “get well soon.” That is why I find those words so hurtful.
When I have exacerbations of my EGPA, I treat the symptoms with powerful medications. I hope to recover most of my prior functioning, but I will not “get better soon.” I will never get better soon.
My goal is to prevent more damage to my body. I have many doctors’ appointments to check my organs and systems and ensure that EGPA is not silently attacking. I have lab work done every month and scans of various parts of my body as needed. I have a full cardiac work-up every year to make sure my heart is going strong. This is not to ensure that I get better, but to ensure that I do not get worse.
I get very tired of these appointments. There should be a term like “white coat fatigue” that describes the exhaustion of not wanting to see another doctor.
I hate that most of my calendar fills up with medical reminders and appointments. I dislike walking into a waiting room and filling out forms with the same information every time. I cringe whenever I need an extra page to fill in my medication list. Being unable to answer standard medical questions in a quick sentence leaves me resentful.
I try to avoid the people who say, “I hope you get better soon.” I give a customary smile and usually say, “Thank you,” or something similar, but sometimes I am grumpy and reply, “Not likely,” or “Don’t we all.” On those days, weariness overwhelms me, and I want to curl up in bed, pull the covers over my head, and not go to any more appointments, tests, or procedures.
Don’t get me wrong, I yearn to get better soon, but I comprehend that the probability of that happening is slim. All I want to do is remain stable and avoid any more bodily damage.
Instead, I encourage others to have an uneventful recovery. This simple line shows that I understand that a person may be going through a tough time. I realize they may never get well. I want them to recover from what is ailing them at the moment, and for it to be as nontraumatic and uneventful as possible.
For my readers dealing with complicated medical issues, I wish you uneventful recoveries and realize that we may never get well soon. Yet, we will still keep our positive outlooks as we recover from our current situations.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.