When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.

 

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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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