Dear Doctor,
You’ve never met me before, but I know you. Or, at least, I know your type. You’re very educated. You know how to treat a myriad of common things – cancer, strep throat, a broken femur of a kid who fell off his bike coasting down a hill. You’re a master at it.
Then you get to me.
You’ve most likely never heard of the extremely rare condition I was born with. You try to hide it, but I see you Googling it on your phone. For the record, that’s not reassuring at all. You ask me about my medical history overall and I just give you the broad strokes, like what organs I’m missing and the surgeries I’ve endured since birth. I’ve had over 150 surgical procedures in my three plus decade of life, but I only tell you the major ones just to save time.
I’m in the ER due to a flare up of my condition. I’m in agony, but I’ve been through this so many times that I don’t look like I’m in pain at all. When you ask me how much pain I’m in on the scale of 1 to 10 and I say 7, you look at me skeptically and then suspiciously. You’ve just mentally labeled me a drug seeker.
Eventually you order a dose of pain meds, but it’s a minuscule amount and it doesn’t do anything for me. Over the years I’ve built up a remarkably high tolerance for narcotics, so it takes Herculean amounts of medication to actually control pain. So I ask for some more meds and also ask for some Zofran and IV Benadryl to control the itching that narcotics always gives me. Yet another red flag for you… Not only do I want more opioids, I want IV Benadryl, something that many true drug seekers ask for because it supposedly enhances the euphoria of whatever pain med you give it with. I don’t really understand that logic, because I hate receiving it because it burns like fire going in and it makes me feel like I’m choking. I only tolerate it because I don’t want to scratch my skin raw like when I didn’t get any Benadryl after a dose of morphine and I scratched so hard I actually drew blood and I now have a tiny scar on my arm to remind me of the whole ordeal.
It’s decided that I need to be admitted to the medical floor for treatment, so now I’m dealing with another doctor, the hospitalist. Hospitalists are basically staff physicians, taking care of the patients’ problems that don’t require a specialist. You, the hospitalist, barely glance at my chart before deciding what antibiotic to give me. The first one you suggest is something that I am quite allergic to, as are the next three options you suggest. Now you’re annoyed. Surely I can’t be allergic to that many meds. Oh, but I can and I am. I’ve been on so many IV antibiotics over my entire life to the point where my body has rejected and/or become immune to many of them. I tell you the antibiotic I’m confident will lick my infection and you look at me like I’ve grown a second head. I’m just a patient, how would I know what medication I need? What you don’t understand is that I’m not just a “patient”, I’m a “professional patient“. Keeping myself as medically stable as I can is practically my full-time job.
You review my medication list and ask if I really need “all these meds”. Most of them are supplements, like potassium, because my body isn’t capable enough of making enough to keep me alive, so yes, I need them. Then you see the psych meds I’m on – an antidepressant I take daily and an anxiety med I take as needed, which is usually in medical situations – and you silently judge me for it. I can tell. My life can’t be that bad that I need those meds! Actually, my life has been so much better since I started them. I have severe medical PTSD and the meds I take keep away the night terrors I had for a very long time – mostly flashbacks of traumatic surgeries and other procedures. Later that night, the nurse brings my evening medicines and those two pills aren’t there because you’ve decided I don’t need them. You did, however, write an order for pain meds – a tiny dose that will do next to nothing, but I take it anyway. Even if it brings my pain down from a 7 to a 6, it’s progress. Of course, you didn’t write for Benadryl so I’m scratching my arms to the point it looks like a cat attacked me.
After a few days in the hospital, I’m well enough to go home and continue my IV antibiotics there. The hitch? I have to have some sort of central line placed before I’m allowed to leave. That means I’m taken down to interventional radiology, where they insert PICC lines and ports for long term IV use. Today I need a PICC, so I get practically naked and climb up on a tiny cold table that a tech straps me onto – my arms, legs and torso are all tied down, The doctor placing the PICC studies the vascular structures in both my arms before picking one that looks suitable to place the PICC. I immediately say no, because I know that vein is internally scarred and there’s no way in hell you’re going to get a a 22 inch catheter in there. You ignore me and forge ahead, starting before the lidocaine has taken effect, and I scream out loud at how much what you’re doing is hurting me. A tech suggests they give me a mild sedative through the normal IV I have, but you say I’m a trooper and I can tough it out just fine. So for 90 minutes I lay on a table while you cut me open with a scalpel, failing at your first attempt because that vein you said was perfect actually wasn’t at all.
After another three tries, you secure the PICC in an awkward place practically on my shoulder. All the failed attempts plus the one that succeeded hurt terribly, but I don’t bother to say anything to you about it. Shortly after, I’m taken back to my room. My nurse sees the failed attempts marks and the awkward successful one and without me even asking he goes and gets me morphine, risking his license to give me much more than prescribed because I’m a frequent flyer on his floor and he understands my tolerance.
A few hours later I finally get home, The home health nurse that is supposed to help me maintain my PICC can’t come see me for a few days and the pharmacy that will provide the antibiotics I’ll be administering myself isn’t sure when they’ll be able to get the medication to me because I live “so far away” in a suburb and not the main city. I look it up and see it takes fifteen minutes at the most to get to my apartment from the pharmacy. After speaking to multiple supervisors, I finally get someone to agree to deliver what I need in a few hours.
I’m hungry, because I’ve only been eating hospital food for the past few days and that is less than appetizing. I need a shower, but I have to wait for my husband to get home so he can help me wrap my PICC in a plastic sleeve thing that will keep the dressing clean and dry. I need to sleep, because no one gets much real sleep while they are hospitalized.
Once I’ve eaten, signed for my medication and put it in the fridge, taken a shower with my plastic cover that is really uncomfortable, I crawl into bed and I’m asleep in less than a minute, staying totally passed out for at least twelve hours.
This is what it’s like living with a lifelong, chronic illness and it’s beyond frustrating some days. If the ER doctor had listened about how much morphine I usually need my pain would have been merely uncomfortable instead of unbearable. If the hospitalist would have written orders for my anxiety meds, I wouldn’t have woken up every night I was there from a horrible nightmare. If the man placing the PICC line listened to me about not trying an unsuitable vein, I wouldn’t have had a massive bruise and temporary nerve damage from how he dug into my arm to get to that vein.
Doctors need to listen. They need to be humble, They need compassion. They need to learn that a chronically ill person knows their body better than any doctor ever would and to trust the person’s judgment because the patient is hardly ever wrong.
Signed, Emily
Emily Hendricks Jensen 