My doctor doesn’t care about my nervous system (& yours probably doesn’t either)

Recently I had some labs come back that were less than stellar. To put this into perspective, I just returned from traveling abroad, I was still getting settled back into routine, & I happened to have an allergic reaction on thanksgiving that put things into a bit of a tailspin. So I wasn’t surprised that my labs were off, & when the nurse from the clinic called me in a panic, I explained this. I wasn’t worried. I know my body. I was expecting to retest in a week & if those numbers were still off we could make a plan for moving forward.

I fully acknowledge the numbers looked bad. It probably was cause for some alarm. & I wasn’t worried, I know my body. I’ve been fortunate enough to have many people on my medical team that validate my knowing, & trust me when I speak. & I’ve had an equal number who think I’m absolutely off my rocker & should not be trusted. This nurse that called me is someone I’ve never spoken to before, & in her defence I am a bit of an acquired taste. Still, what happened next wasn’t what should have happened, & I’m going to break it down for you.

Tuesday I got labs, & Wednesday first thing I called my coordinator’s office letting him know I’d seen the labs, I knew what the numbers meant, & my plan was to retest in a week & to let me know if they wanted any additional tests added (I was thinking potentially looking for inflammation markers, a recurrence of EBV or something of the sort). I got a call not even a half hour later from someone I’ve never spoken to before from the clinic. She hadn’t listened to my message saying I knew what was going on, & told me I needed repeat labs done the next morning. Tell me what bodily system can massively fluctuate in 48 hours? I explained I understood her concern, I thought it was from an allergic reaction, my plan was to retest the following week & I would go to the ER if I developed any symptoms.

This was not a good plan, apparently, & I needed the test done the next day. Which meant I’d need to drive across town to a new place I’d never been to & don’t make a habit of going to because of its reputation (a reputation I fully understand now having been there & will never be going there again). They also wanted a bunch of other tests done that I’m sure there was probably reasoning for but made literally no sense based on my non existent symptomology. I agree to get the tests done, still saying I think this is unnecessary.

This is the moment I begin questioning myself. Their urgency & panic begin taking over. What if I am missing something? What if I’m crazy? What if…?

I spend that entire day in a knot, still juggling phone calls between people who think I’m actively in danger & are telling me what we’re doing 27 steps down the line. They throw words around that make me think I need to rearrange my entire life & cancel all plans. I rebook meetings to coordinate the hospital appointments they wanted, call friends trying not to worry even though I totally am now, & attempt to distract myself with the real housewives.

The next morning I drive across town to the place they wanted me to go. I wait all day to get results. All day I panic. All day I am essentially planning my own funeral, catastrophizing. I’m in a state of fight/flight, & despite my best attempts to ground myself I feel wildly unstable all day.

The results come in, confirming what I knew deep in my gut to be true. It’s all reflective of an allergic reaction. My lab values are trending towards normal. I can breathe.

So let’s break down what happened, & why it isn’t helpful. I want to start off by saying I appreciate my medical team, & I have full faith if something really was wrong they would catch it. I’ve always been complex, & taking that into consideration it makes sense to jump the gun & charge forward at the first sign of danger. & if someone had listened to me on the phone that day, or any of the other times I’ve approached my medical team with a concern, they would know my main train of thought wasn’t on rejection, or any of the other major things they were throwing out but on something else entirely. They would know none of my symptoms matched what they were thinking, & in fact I can articulate my symptoms really well (thank the years of both living & working in the medical system for that).

But the other thing I want to note here that feels equally important is I wasn’t worried. & its not because I was burying my head in the sand, didn't know what the labs meant or was ignorant. I wasn’t worried because I knew my body. & what this revealed to me was a deeper issue where doctors don’t trust their patients. It’s not this collaborative care effort. & this is exactly what I go to work & speak up against every day. Patients deserve to be believed. We’re not crazy, we’re actually incredibly smart, & we know whats happening with our bodies. No one is out here making medical decisions out of the blue without doing what they think is best. & one thing I’ve noticed by talking to so many patients & being one myself is I look at the entire picture when something new pops up whereas my doctors, from the snapshot in time test results they have in their hands, see me as an organ. We need doctors, we love doctors, & I’m a whole person.

So when I got that call stating this all needed to be done right now & giving me worst case scenarios, the default reaction to this would be maybe they know something I don’t? They went to school for years & years, & maybe I’m missing something. I started doubting myself. I started blaming myself as the problem. Maybe I was missing something, but how it was handled became a problem when their urgency & panic was thrust onto me. Their worry settled into my nervous system, telling me there was reason to panic. So I responded to that panic. What happens when someone is panicked, stressed & overwhelmed? The body responds to that, bringing necessary survival functions onboard, turning off non-essential functions & increasing stress hormones in the body that would then alter the very lab results they are looking at. It seems counter intuitive.

How could this have been handled better? Because the alarm was a valid response. I know people process things very differently, so what should have happened here is specific to me. This leads back to the importance of listening to patients, & learning how they want to be given information. Because for me specifically, that information should have been delivered by someone I already have a relationship with & trust. I get thats not always possible, so we move on to step 2. I was aware of what was happening in my body, & could articulate it. I should have been believed. My ideas should have been counted as valid. & maybe the doctor has an entirely different idea, which is fine, but mine should have been counted. Given my situation, the next steps should have been just to repeat tests. Maybe the 48 hours was warranted, I get wanting to add an extra test (Maybe not all the ones I got, but I digress). I (patient, not doctor) think the very first reaction to a single set of off test results should be repeat the test. Thats it, & then we go from there.

Telling me 27 steps down the road only serves to disregulate my nervous system. Now I’m thinking worst case scenario, update my will & say my final goodbyes. To one off test result… For people who have experienced trauma, which many of us in the medical system have, this is going to be a valid response. We catastrophize. In the past this has kept us safe. We need to be hypervigilent, prepared for anything.

I’m the type of person I don’t need to know that far down the road. Maybe my doctors already have that plan, & that’s great. That’s why I want them on my medical team, I want those bases covered. They can think it, write it down, do whatever with it, but I as the patient don’t need to know it. That comes back to my personality type, maybe some people do want to know. This goes back to relationship.

For me, knowing they were already making a plan for worst case scenario only contributed to my stress. It’s not that I don’t care, it’s that I do. It’s that I’m a whole person, & that deserves to be taken into account.

There are ways this could have been delivered that would have felt more soothing to my nervous system. I said to a friend during these chaotic hours there needs to be an option of “Let me hold your hand while I say this.” I know the tools to regulate myself, & even then I floundered. My husband & I joked there needs to be a job as a doctor translator, which breaks down the medical terms into layman terms & delivers them in a way that is less harsh & clinical. That would have gone a long way. Focusing on the single next step would have been helpful for me. Even if they were stressed, I should not have been able to sense that stress.

I also think these kinds of calls should come with a free referral to a therapist, or a support group, or a peer mentor. (This is the work I do with the transplant community, & I so strongly believe this needs to be an option for all patients). Remind people of their strengths, resources & supports (This is also the work I do as a coach specializing in chronic illness & transplantation).

Even if the results are bad, even if it does mean a change of plans, I need to be given the tools to cope with that well. Because I’m not just an organ.

I’m not saying I know all the answers. But I am trying. I do believe patient centred care needs to be the way forward. Medical providers need to be trauma informed. Patients deserve to be believed.