Dear Problem Patients
An open letter to anyone who’s ever felt dismissed by their doctor
Dear Problem Patients:
I want you to know that I believe you. No matter what is going on with your body or how strange it sounds when you try to explain it, I want you to know that I believe you.
Maybe your friends are pulling away because you keep canceling plans and you don’t have the words to explain why. Maybe your job performance or your studies are suffering because it takes all you have just to keep a healthy-looking face on during the day. Maybe you’ve stopped working entirely because your foggy brain and your tired aching body can no longer perform tasks that used to be easy. Maybe your family thinks you need to stop being so dramatic; maybe they’ve said this to you explicitly or maybe it’s implied when they roll their eyes, when they stop asking you how you’re doing. Maybe your doctor leaned away from you when you brought up your concerns and suggested you see a therapist. Maybe you feel really alone right now. Maybe you’ve been feeling alone for a long time.
I want you to know that you’re not alone. I want you to know that there are so many other people who feel uncertain and isolated and scared because something is happening with their bodies that their doctors can’t explain. I want you to know that every single person with a diagnosed illness has been where you are now. I want you to know that a diagnosis doesn’t magically make these feelings go away.
Maybe you’re wondering if this is all in your head. Maybe you’re wondering if you brought this upon yourself somehow. Maybe you’re taking your physical and mental health into your own hands with an interminable to-do list for self improvement. Maybe the doubt and the guilt and the wondering have stopped you in your tracks completely.
I want you to know that the wellness industry is gaslighting you. I want you to know that a lot of people are making a lot of money by trying to convince you that you can hustle your way back to good health, no matter your circumstance. I want you to know that getting more exercise or eating a better diet or improving your sleep hygiene might help you feel better but it might not make any difference at all for you, and that isn’t your fault. It’s not your fault if you don’t have the space in your head or your schedule or your budget to embrace every lifestyle cure that shows up on your instagram feed. It’s not your fault.
Maybe you feel guilty for drinking alcohol or eating gluten or consuming sugar. Maybe you worry that staying out late or going out dancing or spending the day in bed would mean that you don’t really want to get better. Maybe you are tired of performing self-care so that the people around you believe that you deserve their support. Maybe you believe that you have to be the perfect patient all the time in order to be worthy of compassion.
I want you to know that you are worthy of compassion. I want you to know that I believe you are doing your best to take care of yourself. I want you to know that sometimes taking care of yourself means doing everything wrong so that you can try to forget your body for just one moment and feel as free as you imagine everybody else to be.
Maybe you’ve been told to lose weight*, or you’re a woman, or a person of color. Maybe you are young, or never went to college, or English isn’t your first language. Maybe you belong to more than one of these groups. Maybe you wonder if you would be taken more seriously if you were a thin white cis man with a graduate degree. Maybe you are a thin white cis man with a graduate degree and still, your doctor doesn’t know how to help you.
I want you to know that medical bias is real, but I also want you to know that the way we see medicine practiced on television is a fantasy. I want you to know that you can have a great doctor and a real illness and it still might take months, years, or even decades for doctors to find the root of your problem. And even if doctors never find the root of your problem, I want you to know that I believe that you have a problem. (If you want to know more about how chronic illness diagnosis works, I’ve written about that here.)
Maybe you are angry that the people you counted on have stopped showing up for you. Maybe you are grieving the life you expected to have, the plans you made when you believed that your body was healthy. Maybe you are sad or desperate or numb. Maybe you don’t feel anything at all because you use all your energy just trying to survive.
I want you to know that I am angry and grieving too. Sometimes I feel sad, I feel desperate, I feel numb. And I also want you to know that talking to other people who know what this feels like has changed everything for me. I want you to know that it’s okay to feel joy when your body is hurting. I want you to know that feeling joy doesn’t undermine how much you are struggling. I want you to know that it’s okay if you haven’t found any joy in your struggle at all.
Maybe you’re thinking about sharing your story but are waiting for diagnosis or remission to give you a neat and tidy ending. Maybe you are already turning your story into art, but you are scared that people will think your pain is too much. Maybe you are yearning for stories like yours, but you don’t know how to find them.
I want you to know that your story doesn’t need a neat and tidy ending. I want you to know that your pain is not too much. I want you to know that somebody out there is yearning for a story just like yours that is honest about pain or maybe joy and that ends in an uncertain and messy place. I want you to know that your story matters.
I want to know your story. I want to help you find the stories you’ve been yearning for. If you saw a piece of your story in this letter, I hope that you will share it. I hope that somebody you care about will read this letter and see a piece of their story too.
[update from 11/11/19: After writing this letter, I decided to create a Medium publication for sharing stories about chronic illness. You can find everything that you need to know about sharing your own story right here.]
I didn’t write this letter to promote my podcast, but as I was finishing this letter I found myself wishing I had something more to offer. Right now, my podcast is what I have to offer. On No End In Sight, I interview people living with chronic illness in long and sometimes meandering detail. Maybe one of those stories will be exactly what you need to hear right now. And maybe it’s a place where you’d like to share your story, no diagnosis required.
*earlier versions of this letter have said “overweight” and “person of size.”