[Seek] Patience

Living with chronic illness and chronic pain requires copious patience.

Especially when having to explain the complexities of your unique combination of illnesses to medical professionals. Especially when you have to convince said medical professionals that you know your own body and that you are, in fact, in as much pain as you say you are even though you aren't showing it.

I went to an urgent care clinic because I have a jaw infection and needed antibiotics. It should be a simple thing. My tooth is literally split in two pieces with a hole in the middle that goes down into my jaw. I'd been seen months before at the same place for a jaw infection due to said tooth.

Doctor: Why are you here today?

Me: I have a tooth that's split in half and have a jaw infection. I'm in a ton of pain from my jaw to behind my ear. I need antibiotics.

Doctor: Why are you here instead of seeing a dentist?

Me: Because of my multiple chronic illnesses, I need go to an oral surgeon to get it taken care of. A dentist can't do anything for me at the moment. I just need antibiotics in the meantime.

Doctor: Do you have a primary care doctor?

Me: Yes, I will be seeing her on Friday for a different issue and an follow up with her about this as well. I'm here because the office couldn't fit me in today and the pain is overwhelming.

Doctor: How long has this been bothering you? Have you been to a dentist for it?

Me: Most recently since Saturday. I saw a dentist for this last year and was referred to an oral surgeon because I don't get pain relief from novocaine and the roots of my teeth are abnormally long, as is fairly common in people with hEDS, so I have to have it extracted under anesthesia ... and I have adrenal insufficiency, so need iv hydrocortisone before extractions due to me going into adrenal crisis last time I had one. And it's complicated by the fact that I'm on immunosuppressive medications, so my risk of infection is high. Before I could go to my oral surgery evaluation, covid-19 arrived and they cancelled my appointment. I've been unable to get an appointment because now they're backed up with emergencies and my tooth hasn't been bothering me until recently. 

Doctor: Ok. Let me see the tooth... There isn't an abscess. 

Me: I know. But my jaw is definitely infected and I don't want it to get to the point where there is an abscess, which is why I'm here. That and the pain. 

Doctor: So you want pain medica...

Me: No pain meds. I just need antibiotics to clear up the infection so the pain goes away. I have autoimmune liver disease and can't take pain medication.

Doctor: Oh. Ok. So ... you're allergic to penicillin?  I can put you on *begins to say name of antibiotic*

Me: *finishes name of antibiotic* Yes. That's what they gave me last time. And I already...

Doctor: You'll need to take probiotics with this.

Me: Yes...I already take them and would really like to avoid getting C diff. 

Doctor: *looks surprised that I know about C diff* Yes. Good. You should be able to go to this dental place to get it taken care of.

Me: I did go there last year. They referred me to an oral surgeon. I've tried to get in to get this taken care of, but because I'm medically complex, and because of covid, and because up until now it hasn't been an emergency, they've told me I need to wait to get an appointment.

Doctor: They'll have your paperwork at the front desk and I'll send the prescription in now. 

Me: Ok. Thanks.

This is typical of my interactions with urgent care / emergency medical professionals. I often have to explain repeatedly that I don't want or take pain medication unless absolutely necessary; that I have multiple chronic illnesses and I know my body; that things that work on most people don't work on me.

 I've had doctors argue with me about my body's violent reaction to vaccines and invite them to review my medical records that show my three rounds of hepatitis b vaccines as an adult, over the course of a few years, including the inefficacy of the first two rounds because my body rejected it. I've had doctors tell me I couldn't possibly be in as much pain as I'm in because I'm not acting like I'm in pain. I've had doctors refuse to give me iv hydrocortisone despite a prescription note from my endocrinologist that includes her cell phone number for them to call and confirm dosage and how long they should monitor me. I've had to educate medical professionals about adrenal insufficiency, hypermobile Ehlers Danlos Syndrome, and have to continuously ask doctors what impact the medication they're prescribing will have on my liver, because somehow they forget to add that into the equation. 

Being chronically ill is exhausting and requires being patient with your body, with family and friends, and with healthcare professionals.

Getting medical care while chronically ill is at times exponentially more exhausting and nearly always requires as much patience as the patient can muster.