Hello there. Thanks for stopping by today. If you’re a fellow spoonie you’re very likely familiar with just how different doctor’s appointments can unfold. You probably have your favorites
sorry doctor’s but we do. You’ve probably also been questioned about why you continue to see a doctor if you don’t like the way that person practices medicine. You have had to explain that your insurance only covers so much or that that is the only person approved. For spoonies without ample cash flow, or on state funded health care in the US, medical care can be a bit like walking through a field of landmines…blindfolded. You don’t often get to see the latest and greatest. Where am I going with this? Well, last week I had two doctor’s appointments, both were to see specialists and for different conditions. The style of ‘care’ was so diverse I thought I’d share my experience for anyone else out there that is feeling like it’s worthless to keep going or keep trying. Because that’s another thing we hear…why do you keep going it’s not like there is a cure. Right, yes true, but with MECFS it’s often not our only condition. I started with Fibromyalgia and now have 10 new chronic illness diagnoses over the course of nearly five years. I would have never known this if I hadn’t kept pressing for care. So why do I see doctors I don’t like or that aren’t that great? Truth? Because they can order and read labs, and different specialist order different labs. Knowing the lab results helps me care for my body better. So let’s get on with it.
Appointment number one was with a Rheumatologist. With my health insurance I waited something like eight months a couple years ago to see this person. Also, other doctors have tried to refer me to different Rheumatologists since my first appointment with this person, several times. The insurance company keeps routing me to a location that doesn’t see MECFS patients for Rheumatology, so it turns into this vicious circle. So, I either see no Rheumatologist or I see this one (try explaining to disability why a person with MECFS/FM isn’t seeing a Rheumatologist), so I continue going. The appointment is nothing more than me showing up, them asking me my pain number, doctor walks in looks over labs if there are any, then prescribes medicine, even if I say I can’t take it (side effects). Last time I asked for a refill, and was asked how much I take, I explained I can only take a low dose because of side effects, which I seem to have with most medications as I’m super sensitive. The doctor then asked, “Can you just take more pills? You need to take more pills.” And proceeded to prescribe a much stronger
elephant sedating medication, told me to take it three times a day (mind you this is a super strong opioid, which I’ve told them repeatedly I prefer to stay away from). And the doctor walked out. If you’re thinking I’m leaving something out, I’m not. If you think it was short and sweet because previous appointments had been thorough, also no. This doctor walks in, doesn’t explain labs even when I ask repeatedly, doesn’t answers questions, prescribes medicine and walks out. When I’ve asked about my worsening ANA results I’m met with no answers. It’s surreal, but it’s my reality.
Appointment number two is with a Cardiologist and it’s at the place I was referring to above that doesn’t see MECFS patients for rheumatology, but they will see me for POTS. This doctor is the third doctor I’ve seen there. The first one was in the first couple months of my illness when I still had fancy employer insurance 😊, the second one told me if I showed people my list of symptoms they would think I was crazy, and this last one, well, this person is awesome sauce. My questions are listened to and answered. Tips and compassion are offered. My quirky body is accepted as a reality of the illness. When I shared that thigh-high compression stockings were causing a lot of pain behind my knee there was no judgment, no scoffing, just an acceptance. When I brought up supplements, I was offered two other supplements that also might benefit. When I said I couldn’t get enough coconut water, it was suggested that that is probably my bodies way of saying I needed more magnesium. If you’re curious the two other supplements offered were NADH and CoQ10. After researching on my own it seems these two have been shown to be beneficial for MECFS (if you’d like to read more), which again, isn’t this doctor’s specialty, but this person was kind enough to step outside their box and offer some advice. It’s doctor’s like this that are the reason I keep going, I keep trying.
I know there’s no cure, we all do. It’s not about that. It’s about better understanding what is going on with your body. Chronic illness is scary, it’s heartbreaking, and I wish doctors understood and cared just how far a little compassion and understanding goes. We know our bodies better than anyone. If we say, for instance, I’m having a problem remembering things, and they say well during this appointment you seem fine, what they are really saying is I don’t believe you, and really they are gaslighting because they are also saying You don’t know yourself.
“Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.”
But you do, you know yourself, trust yourselves and keep fighting on warriors. If you’re stuck with a doctor that offers you little to no care, keep asking for labs and if they refuse ask that your chart be noted that they refused. I’ve read that that usually results in getting the labs you need. Thank you for stopping in today. I appreciate that you took time out of your day to see what’s going on with mine. 🌸
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