Generally, doctors are thought to be healers, fixers. They see a problem, analyze it, figure it out, send the patient home with some medication, and soon everyone is happy: the patient is feeling better, no longer experiencing symptoms, and the doctor feels successful in having sent another person on their happy, healthy way.
It’s a different situation with doctors treating patients with chronic illnesses. When treating a patient with a chronic illness, it is a given when walking in the door that there is no “fixing,” no “getting better.” Of course, a doctor can give their patients medications to reduce symptoms and pain and try to bring them to a comfortable daily life, but it is widely acknowledged that with chronic illnesses, there are no “cures,” no long-term solutions, and that chronic illnesses have their ups and downs.
This is frustrating, of course, for the patient above all, as well as the patient’s caregiver(s). As someone with Crohn’s disease, I’ve seen my parents experience sadness, worry, even fear when I’m not feeling my best. I am constantly worried about how my illness will affect my daily life. And yes — it’s frightening waking up every morning knowing that I will never “get better.”
However, I can also see the frustration in my doctor’s eyes, in my physician’s assistant’s eyes, in the nurses’ eyes. They’re frustrated when I complain about my flaring symptoms, and sometimes will even lash out, asking me if I personally have done something to provoke these symptoms. This is, in turn, frustrating and invalidating for me. I have a chronic illness — not everything I do is triggered by my actions. My body is at war with itself, and since I have a severe case of Crohn’s, sometimes my body and its symptoms and behaviors mystify me just as much (if not more) than the doctors and nurses.
Though the frustration of my medical team is often disheartening to experience, I also understand their frustration. I know my team has the best of intentions for me — I know every team for every chronically ill patient does. I know they want me to feel better — not only does that mean that I’m living a happier healthier life, it also means they get to deal with me less, and I get to deal with them less! Everyone would be happier if I were feeling better. So I understand that they may feel incompetent and frustrated when their best efforts seem to be doing nothing.
So, to my doctors and nurses, and the doctors and nurses treating chronically ill patients worldwide: thank you for your efforts. I feel just as frustrated with my body as you do, if not more. I’m sorry we’re stuck in this situation together, but let’s just keep on fighting the fight, and try to keep my stubborn body in check. By working together, we can probably achieve a lot more than working separately.
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