Dear doctor, it’s me. Your favorite patient. Not that you’ve ever said so yourself but with all the follow-ups I am made to make, I can only imagine I’m one. Dear doctor, I’m tired—tired of being misdiagnosed and poked and prodded and tested and misdiagnosed again. And dear doctor, I know you’re trying your best but I’m tired of Googling every new symptom that pops up and having to wait for weeks to make an appointment only to find out that, yet again, this new symptom is not a manifestation of my already full list of illnesses. It’s new and guess what? This one is permanent too!
Dear doctor, you have no idea what it’s like to be a 5-year-old with scars and wounds on your face. You don’t know what it’s like to have “chicken pox” every day every year. You have no idea what it feels like to have to keep saying, “No, this isn’t acne, and five year olds don’t have acne, Dhiraj!” You have no idea how it affects the self-confidence of a child to look in the mirror and see horrendous scars and a bloody face. You have no idea that at age 10, a doctor telling me I have a sun allergy meant that I could finally say, “No, this isn’t acne, it’s a sun allergy, Dhiraj!”
Dear doctor, you have no idea what it’s like to go from doctor to doctor like a ping-pong ball and get a different diagnosis every time. One time its sun allergy and then it’s Acne Vulgaris and then a few other misdiagnosed cases till a doctor finally looks at me and says, “You know what? You didn’t have any of those other allergies. What you do have is Papular Urtiaria.”, and you don’t know what it’s like to realize that you have been taking the wrong medication for the past four years, and not just that; you have been taking the kind of medication which proliferates your symptoms.
Dear doctor, you give me medicines and you tell me when to consume or apply them, and that’s that. A follow-up in a few weeks to check up on me! The time between those checkups is lost on you. You have no idea what it feels like to have to carry a mirror on hand and check after every period to see if your face is alright because the medication you prescribed me so nonchalantly has mad side effects and I feel like my face is going to flake off. Dear doctor, it was your responsibility to explain side effects and precautions that I needed to take. It was your job to explain this, not a YouTube content creator, and not four years after I stopped using your medicines, and that’s why my misery back then falls upon you. Not because I blame you, but because you weren’t there to see me shy away from people and avoid conversation because I knew my face was flaking off in places and I hadn’t yet found time to put “Emolene” to take care of dry patches for the millionth time that day. You weren’t there when I cried and didn’t agree to go to school because I was tired of everyone, even my teachers starting the conversation with “What happened to your face? It’s gotten worse.”, and I know that part of my life wasn’t a part of your job but dear doctor; it was an effect that you set in motion.
Dear doctor, I came to you because my elbows and my back and my legs and my stomach area were all covered with wounds once again, so long after I thought it was over. I asked if it was psoriasis or dermatitis or eczema. You see, I’ve always done my part. I research heavily and I put facts in front of you. I have symptom logs that clearly show when things happened and what I was eating/drinking/doing that day. You told me to take a blood test, and sent me home with a leaflet that said “Eczema” and a strict order to avoid gluten. I did everything you asked, and I even got a biopsy done that confirmed not Eczema but Dermatitis Herpetiformis. Thus it began, and with so little information from you I was left alone again to turn to Google for advice. I met the most amazing group of people and learned everything on my own, and really, when you ask if I’m avoiding gluten in every follow up, I’m shocked.
You of all people should know how hard that is. You of all people should understand that when I say I do my best, I don’t mean I’m eating whatever I find and hoping it’s gluten-free. What I mean is that gluten is everywhere and I never know if I’m really safe in any environment, sometimes even my own room, and you should know that!
Dear doctor, it’s not easy — never knows if my monthly river will flow monthly. Its not easy having to take blood tests every three months to check whether my hormones are doing okay, and the first time I came in, when you said I needed to take an ultrasound test I was mortified; even more so when I saw little round objects surrounding my ovaries during the test. It isn’t easy seeing such a long name of a damned diagnosis on the report, “Poly Cystic Ovarian Syndrome”, nor is it possible to completely understand the statement “You will probably never be able to give birth.” Dear doctor, I’m 18. I shouldn’t be riddled with the stress of the possibility of being infertile at such a young age. I shouldn’t be scared of the word Cyst and be grateful that mine are only a few mm’s in circumference because a bigger cyst may mean cancer. You shouldn’t be so far removed from the Pharmacy industry that when I ask you whether your medications could contain gluten, you reply, “Ask the pharmacist. He’ll know.” and then the pharmacist replies very easily, “Nahunu parne ho (translation: it may be present but in all probability it isn’t).” No, that is not a satisfactory response and yet I take your medicine because that’s supposed to treat PCOS, and I go home and research all ingredients to make sure it’s fine all the while hoping that the manufacturing plant doesn’t process other medicines rich in gluten.
Dear doctor, it isn’t fair to me that I know more about the chemistry of the medicines you are prescribing me, the side effects, the NNT, etc. than your counterparts do. When I go from a Dermatologist’s office to a Gastroenterologist’s, I shouldn’t have to explain the medicines I’m taking to him, because you are both treating similar illnesses, Dermatitis Herpetiformis and Celiac. Furthermore, when I go to the Gastro, I shouldn’t have to explain what Celiac is!!! I shouldn’t have to endure your stupidity, honestly. I needn’t hear you say that Celiac is not related to the gut, and storm out of your office silently cursing myself for your incompetence. I shouldn’t have to self-diagnose myself as a Celiac because I don’t trust you to carry out an intestine biopsy the right way, and Dermatitis Herpetiformis already confirms the diagnosis if you also have severe gut related symptoms.
Dear doctor, when I come to you I come for answers and reassurance. When you tell me that you don’t know what to do with my diagnosis I’m left in the dark. When I teach you more about a gluten free diet than you as a dietician know, it makes me question your credibility. I know that my illnesses are rare, but it should be your initiative to tell me to come for a follow up a week later, or whenever, really so that you have a chance to read up on it. When you are impressed by my reservoir of knowledge about my own illness, and my habit of logging everything in from my sleep schedule to my meals and my workouts, you’re essentially telling me you have nothing to add to it, and that’s not reassurance because someone who doesn’t know about my illness cannot reassure me. They can only say, “Yeah, you’re probably on the right track.” and that means nothing in my world. That means I’m wasting my money on you. I shouldn’t have to waste my money on you.
Dear doctor, I’m exhausted of all of the things I need to keep track of. I’m scared of my pills because I take at least 4 after every meal. I’m unorganized and I only recently started keeping an alarm to remind me of the pills I need to take. It’s not fair that I need a 30-minute head start to prepare mentally for the fact that I’m about to take medication and there might be a gag reflex but it is okay and it is necessary.
Dear doctor, I don’t deserve to have to wait for a month to get diagnosed whenever I have a new symptom pop up. I shouldn’t have to research everything from top to bottom complete with images to confirm that what I have is akin to what is being shown, because I am not a doctor and I don’t know the scientific names or even the common names in most cases. I shouldn’t have to “use home remedies” in order to make sure that no chemicals actually end up worsening my symptoms while you’re away on your US trip and can’t see me. I shouldn’t have to sit on the other side of your table and look at you silently judging me for not being able to self diagnose a Nickel allergy, and accidentally thinking I had skin hives, which are very common in Celiac patients, and you know what? They look the same to an inexperienced eye! Nickel allergy, whoever heard of that? You don’t know how it feels to be in my shoes, constantly being asked whether I slit my throat in an attempted suicide because I’m wearing band-aids right there, and having to say, “Nah, just an allergy.” You don’t know how grateful I am that I have long hair because that very conveniently hides from view the worst case of nickel allergy I have; the dry, patchy, red skin underneath the flakes all around my neck.
Dear doctor, you haven’t been through the, “Why only you?” and “Harey! Another one?” You don’t know how ugly I feel sometimes even though I am one of the strongest people I know, and believe me, that’s not narcissism at play. Normally, I love myself. I know I’m perfect in my imperfection and anyone who says any different isn’t worth my time, but tell me, doctor, would you feel beautiful when you look at yourself in the mirror and see only scars covering the entirety of your body? Would you feel loved? Lovable? No, dear doctor, I am not complaining. Merely trying to make you understand that those scars hurt so much less than the process of trying to get dressed up every morning and dressed down every night. Through it all, I know somewhere in the back of my mind that it’s okay. I don’t hate myself, only circumstances. And I’m not at all discontent. This does not define me, none of this does, and yet it’s such a huge part of my life, doctor. I can’t ignore it. I deal with it in my own way, and don’t worry; this letter only feels depressing because all of my life has been condensed into this little piece. My life isn’t depressing, it’s amazing. I don’t even think about any of this during the day. Not until someone makes a comment. Even then, I believe I handle it as gracefully as I can.
Dear doctor, my point is this. You have studied the illnesses I suffer. This doesn’t make you above me. I’m living it. Please listen to me when I say something is wrong. I can only make quasi-educated and Googled guesses. You’re the one with the degree and numerous certificates on the wall. Dear doctor, if I knew how to diagnose myself I wouldn’t be here enduring your condescendence. I’m here to better understand my broken and tattered body. Help me, don’t blame me.
Featured image by writer.