To My Chronic Illness Medical Team
There is no finish line.
You won’t walk out of the operating room in a moment of triumph saying, “We got it! She’s better now.” The dramatic moments in our relationship are so quiet they would never make it into a medical drama, yet they engulf the room in a searing way that I know we both feel. You are the unsung heroes of the medical profession –providers who care for patients like me who have chronic, complex, invisible illnesses.
Your daily grind is likely a marathon, not a sprint.
It’s also an “Amazing Race” type adventure where the rules are constantly changing. What worked yesterday doesn’t always work today, and the treatment plan is a multiple choice question where the answer is conceivably all of the above, none of the above, or somewhere in between. It takes a special type of person to thrive in an environment of such consistent ambiguity, and I deeply appreciate those providers who patiently, lovingly and competently wade into the murky waters of supporting patients with chronic conditions.
To the rheumatologist who has supported me since I was just on the cusp of adulthood, who has celebrated my highs and lows from a pain-free wedding to a huge flare-up of pain, illness and inflammation after childbirth: I love how we start each appointment by collectively ogling over the latest cute photo of my young son. The way in which you take a genuine interest in me as a person, and my illness in the context of what’s meaningful in my life, is not lost on me. I’ll never forget the way you paused and looked me in the eye as you gently used the word “deformity” to describe my affected toes. That pause and the moment of connection showed me that even after your decades of medical training, after the word “deformity” has become normalized to you, you know and you care what this word means to me. It seems to come easily to you, to experience a patient’s symptoms through their patient’s eyes, but I know how rare it is after seeing hundreds of providers in my lifetime. Thank you for your empathy, for laughing and crying with me, and for your constant, competent care.
To the psychologist who has helped me cope with the effect my chronic illnesses have on all aspects of my life: It feels sacrilegious to attempt to put some of the magic of therapy into words. All I can say is thank you for being present during my pain and my triumphs, for helping me connect so many dots of my present and past, and for helping me ultimately be a better human for myself and those around me.
To the physical therapist who, after the two hour intake appointment where we discussed my convoluted medical history and perplexing present symptoms, simply but firmly said, “It’s not too much. This is what I do:” I had gotten so used to fearing I was “a little much” for a provider, so used to fearing that my symptoms were too “unusual” for anyone to make sense of, that I was taken aback by his calm confidence. It is beautiful to behold a person who is 100 percent present and clearly in their element, and it is doubly incredible to witness this phenomenon while being in a vulnerable state, where you walk into the appointment trying not to hope too deeply for the solutions you so desperately need. Like many chronic illness patients, I have longed for Dr. House figures who thrive on the complicated, unusual cases, yet in reality they can be hard to find (particularly those who also respect the psychosocial dimensions of care). I am so fortunate to have not one, but two wonderful physical therapists on my team. Thank you both for braving the wilderness of the weird, unusual and challenging cases!
To the naturopaths who helped me get to the root of my severe gastrointestinal issues, after numerous other professionals had insinuated that they were “in my head:” Thank you for believing me, and for finding solutions when I was on the cusp of losing hope.
I’ll never forget the time I simply burst into tears the moment you cracked the door open; I was in such a delicate place, and your calm confidence and clinical competence led me on the path to restoring parts of my health that had been chronically impoverished. Thank you.
To the occupational therapist and certified hand therapist who made my beautiful purple wrist and thumb splint, which allowed me to carry my baby comfortably when I was experiencing a rheumatoid arthritis flare: In that simple one hour appointment, you provided a tool that has enabled me to hold my child comfortably while protecting my joints everywhere from the beaches of Hawaii to the trenches of 2:00 a.m. wake-ups in the comfort of my own home. Thank you.
To the rheumatology professionals who visited their state and national representatives to advocate for issues that help patients receive the (often expensive) care they ethically deserve.
On a similar note, to the medical school instructors like Dr. Helen Emery who have doggedly ensured that medical students are exposed to authentic patient voices at events such as “Rheumapalooza” at the University of Washington: Thank you for going above and beyond your job description, for the benefit of your patients.
And finally, to the medical students out there who haven’t yet selected a medical specialty: Please, please consider going into a specialty such as rheumatology (or better yet, pediatric rheumatology, where there is a severe nationwide shortage at the moment). In choosing one of these fields, you have the chance of a lifelong relationship with patients who will often see you as, quite literally, our only hope.
This is my ode all the providers of patients with chronic, invisible illnesses. Patients are sometimes vocal about their negative experiences, particularly those who have diseases which are notorious for being minimized by the medical community (such as autoimmune diseases, chronic pain and other invisible illnesses). Yet, it is precisely these negative experiences that make us all the more grateful to those of you who do the important work of helping us manage our conditions in the most dignified, effective way possible.
To my personal providers above, and to all the other providers around the world who are doing the incredibly important and often seemingly thankless job of managing these complex illnesses: I see you, and I thank you!
This was published on Creaky Joints.