A Hospital Experience with a Rare Chronic Illness: A Letter to Physicians

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 chronic illness 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, 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 decades of life, but I only tell you the major ones to save time.

I’m in the ER due to a flare-up of my rare 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 to rate my pain from 1 to 10 and I say 7, you look at me skeptically, 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 does nothing for me. Over the years, I’ve built up a remarkably high tolerance for narcotics, so it takes large doses to control my pain . When I ask for more meds and also request Zofran and IV Benadryl to control the itching that narcotics always give me, you become even more suspicious.

Not only do I need more opioids, but I also want IV Benadryl—something that many so-called drug seekers ask for. But I don’t take it for euphoria. I take it because without it, I will scratch my skin raw. I once scratched so hard I bled, leaving a scar that reminds me of how little doctors believe me.

I’m admitted to the medical floor, where I now deal with the hospitalist. You, the hospitalist, barely glance at my chart before deciding on an antibiotic. The first one you suggest is something I am severely allergic to, as are the next three you list.

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 in my life that my body has rejected or built immunity to many of them. I suggest the antibiotic that I know works, and you look at me like I’ve grown a second head.

What you don’t understand is that I’m not just a patient —I’m a professional patient . Keeping myself medically stable is practically my full-time job.

You review my medication list and ask if I really need “all these meds.” Most are supplements, like potassium, because my body doesn’t produce enough to keep me alive. Then you see the psych meds —an antidepressant I take daily and an anxiety med I take as needed.

I can feel your silent judgment. My life can’t be that bad, right?

Actually, my life has improved significantly since I started these meds. I have severe medical PTSD , and they prevent the night terrors I used to have—flashbacks of traumatic surgeries and procedures.

That night, my nurse brings my meds, but those two pills are missing. You decided I didn’t need them. You did, however, order pain meds—a tiny dose that barely helps. But I take it anyway. Even a minor improvement in pain is progress.

Of course, you didn’t write an order for Benadryl, so I scratch my arms until they look like a cat attacked me.

I’m discharged. The home health nurse who is supposed to help me maintain my PICC won’t be available for days . The pharmacy delivering my IV antibiotics claims I live too far away , though it’s only a 15-minute drive.

I spend hours fighting for basic care —just to get the meds I need to stay alive.

When I finally get home, I’m starving. I need a shower, but I have to wait for my husband to help me wrap my PICC to keep it dry. I finally eat, sign for my medications, take a painfully uncomfortable shower, and collapse into bed—falling asleep in less than a minute.