Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

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One response to “Chronically Seeking”

migrantthoughts

September 3, 2018 at 1:27 pm

During the very few years when I actually had health insurance, I was in a similar situation as you are, except that I was 100% certain that the specialist I’ve been seeing prescribed the wrong remedy… After taking it and my condition worsening, I did research and it was very wrong what he had done.
However, and here is the similarity with you, my insurance covered only this one and only specialist for the type of specialists I needed to see.
It was June and… I waited until the end of the year when everyone in this country who has health insurance CAN change the insurance plan.
Of course, I had researched things first and could, then, choose the plan that covered the other specialist in this town.
Now, you might not be able to change plan. In that case, I would highly recommend to look into natural medicine/doctors. They have a more global understanding of what is going on, instead of considering only part of you.
It might seem very expensive, but maybe you could afford it.
My experience is that, in the end, I paid less for a naturopath and the remedies s/he prescribed than for what the insurance left me to pay out of pocket of the cost for regular doctors, RX and tests.
There, too, you want to have referrals because some naturopaths don’t know what they are doing.
Chiropractors can sometimes be helpful, too. My late husband had one that helped him a lot with his scleroderma.
Good luck!

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Chronic Diva