Treating the Parts, Not the Whole

Having multiple illnesses means that I also have multiple doctors who treat me. I need a different one for every system of my body that malfunctions. Kind of like I’m collecting them like Pokemon.

And that’s all fine. Doctors specialize so they can more effectively treat a patient, and I get the reasoning behind that. But it also means that my pulmonologist may say one thing and my ENT may say another. As a patient, it’s on me to keep track of what my doctors say and figure out who to listen to.

Case In Point: Coffee

Two of my diagnoses are chronic fatigue syndrome (ME/CFS) and POTS (Postural Orthostatic Tachycardia Syndrome). There are commonly co-morbid and both suck quite a bit. Chronic fatigue syndrome is exactly what it sounds like— I am almost always exhausted, exertion tires me out faster than it should, and sometimes I just have to lie down and either be a puddle or sleep. POTS basically means that when I stand up my heart rate jumps really high and it just stays that high. The reason this happens is that my blood isn’t circulating well and my heart has to work extra hard to push blood from my feet to my head. This all makes me feel really dizzy when standing and can lead to “browning” out (aka pre-syncope) and even syncope (though I’ve luckily always sat down before actually fainting).

There are some things that can help with chronic fatigue. My doctor and I tried a medication but it turned out the best treatment he offered me ended up being adding a second cup of coffee to my day. Which I wasn’t about to complain about since I really like coffee. I found that two cups of coffee was enough to get me through the day most of the time so I stuck with that treatment.

Enter: long haul covid.

After covid, I ended up with POTS, which can be triggered by illness. After a visit to a nurse practitioner and two cardiologists, I was diagnosed. One of the first things he recommended was cutting caffeine out. Which made sense. But that was absolutely not going to happen because without caffeine I don’t really function.

So what do I do? Which doctor do I listen to?

I made the executive decision that no coffee wasn’t an option. After all, I still have to do things during the day. But I did recognize that two cups of coffee also wasn’t an option; that’s a lot of caffeine. My compromise is to drink one regular cup of coffee every day and, if I need a second one, I’ll drink a cup of decaf. Part of that is I’d gotten used to the ritual of drinking two cups of coffee in the morning. But part of it is that one cup wasn’t quite enough.

What I Would Prefer

I would prefer there be a doctor whose specialty is management of the body as a whole for those of us who have multiple chronic illnesses. Right now, the closest thing is a primary care provider, but this is in addition to all their other duties as primary care physicians. There should be chronic illness care coordinators. Why isn’t this already a thing? Someone who helps patients keep track of all their doctors’ recommendations, gives them updates on new research pertaining to their diagnoses, and helps advocate for them so it doesn’t all fall to the patient.

If there was someone who was helping coordinate my care, maybe I’d have gotten the genetic testing process started already. Maybe I wouldn’t have been put onto a medication by my cardiologist that was likely to spike my asthma. I’d have someone to keep track of my test results and communicate them to all my doctors; to make sure that if I was already getting bloodwork that none of my other doctors wanted any tests run; to help with referrals to other doctors so I don’t have to bother my primary care.

I’m not sure why chronic illness care coordinators are a thing and I’m not sure who would even make them happen. But I hope someday this becomes a real position because it would make it so much easier to navigate the healthcare system as a patient.