Just say, “No, Doc.”

I’m my parents’ son, but it’s a different world today than the one they lived in. My parents came from a place where the doctor knew what he (back then it was a man, more often than not) was talking about and they did what he said, no question. He had the white coat hung on his shoulders, the diplomas hung on the wall, and the stethoscope hung around his neck. He knew best. They were like poor Brian Regan at the doctor.

Although I’m the child of my parents, I’m also a child of the 60’s. We learned to question authority, including doctors. The arrogance and god complex of many medical practitioners has hung in there long after they stopped prescribing bloodletting and Radithor. Here are a few real life examples of the arrogant behavior that gives me pause:

Doctor: “Don’t eat anything on this list.”
Patient (pointing to a confusing entry): “Why is this on the list?”
Doctor: “Just don’t eat any of them.”

Patient (on being diagnosed with MS based solely on a single MRI): “I thought an MS diagnosis required multiple symptoms?”
Doctor: “I know what I’m doing. I’ve been doing this for 30 years. You fit the profile.”

Doctor: “No more trips to Haiti.”

Doctor (to patient in wheelchair): “Why don’t you have a power chair? I guess you just like to be pushed.”

Dermatologist: “Put on SPF15 sunscreen every day. And if you go outside, put on SPF 30.” (Sunscreen indoors? What world are you living in, Doc?)

Neurologist: “MS doesn’t cause pain.”

Neurologist: “MS isn’t the cause of your clumsiness.”

Doctor: “You can’t disagree with me.”
Patient: “Why not?”
Doctor: “Because I’m the doctor.”

It doesn’t take many encounters like those before the naiveté of my parents melts away altogether, replaced by the cynicism I now subscribe to.

Never has there been a better reason to question doctors as there is when dealing with MS. They’re just flailing away at this beast the same as the rest of us. As my doctor once said, “MS keeps you humble.” (That’s why she’s my doctor.)

I remember standing up to my (former) neurologist. I’d been on one of the interferon drugs but had developed the nasty NABs (neutralizing antibodies). Who knows how long I’d been plunging  a needle into myself for no reason? This being before the advent of oral meds, my options going forward were limited:

Tysabri – Hmmm… It kills about 1 in 1000 people who take it, 1 in 100 with certain risk factors. Yeah, I think I’ll pass on that one. I don’t like the odds.

Copaxone – A shot every day? Not sure I want to lower my quality of life that much, thank you very much.

That’s when I dropped out of the DMT scene. By the time newer, less perilous options became available, I was doing so much better under my PB&J regimen, I decided to stick with that.

The lesson here isn’t (necessarily) to give up the drugs, it’s to stick up for (not just stick a needle in) yourself. Don’t be bullied by doctors, the medical establishment, or advertising. It’s your right (dare I say responsibility?) to ask questions. You know your body and your condition better than any doctor. You are your own best advocate.

If you don’t do it, who will?

It’s safe to say that this blog will never get an endorsement from pharmaceutical companies or MS organizations with such counter-cultural views, but I have to practice what I preach: Advocate for myself. If someone else is helped, so much the better.


About rickconti

It's not about me, remember?
This entry was posted in MS and tagged , , , , , , , , , , , , . Bookmark the permalink.

6 Responses to Just say, “No, Doc.”

  1. Sandra Sullivan says:

    Totally agree, advocate for yourself otherwise the medical field will run you through the ringer.
    I have encountered it personally; even the professionals are scared of the impact of our government on either side of the aisle, and the compassion is not on the patience, but on why they are in the medical field! MS Strong; Stay strong: body, mind & spirit! 💞

    • rickconti says:

      Preach it, Sandy! 🙂

      The difference between a knowledgeable, compassionate, humble doctor and the alternative is day and night. Ultimately it’s our lives we’re talking about.

  2. Susan Fedric says:

    I also dropped out of the DMT scene in late 2010 for a few years, and then again in 2016. I had tried Copaxone and had a severe allergic reaction to it. I tried Rebif very briefly and experienced chest pain. Then I tried Tecfidera for quite some time. I have extensive gastrointestinal (GI) issues, which is also a side effect of Tecfidera. I had managed to get through the initial GI side effects of Tecfidera and they basically went away, as the manufacturer stated. However, they came back with a vengeance and I had to stop the medication. I saw my Neurologist recently. Upon reviewing my day-to-day symptoms, she determined, and I agree to some degree, that I am progressing in my disease course; not as far as going from RRMS to SPMS, just worsening of usual symptoms and a few new symptoms. She highly recommended Lemtrada (scary stuff). I allowed her to talk to me about DMTs, so she could put in my record that she had done so. I even took a packet of literature about the DMT, so she could include that in my record, too. I was very straightforward in telling her that I am not going that route. She got quite perturbed, despite the fact she had agreed to be our Neuro whether we (my husband has MS as well) chose DMTs, or not. I practiced nursing for 20 years, before “retiring” in 2010 due to MS and some other health issues, so I learned really quickly how to tactfully, but assertively, to stand my ground with doctors. We must advocate for ourselves.

    • rickconti says:

      What can I say except, “Amen!” My doctor also makes it clear she wants me on one of the meds, but she respects my wishes and we talk about other approaches.

      Thanx for adding your experience, Susan. And thanx for reading!

  3. Jeffrey Marshall says:

    Per usual, my friend, your preaching to the choir. I, for one, have no patience or tolerance for G-d complex doctors and, unfortunately, there are many out there. I think self advocacy is essential. I also think that the doctor must be made aware that not only is my opinion as valid and essential as theirs but that their feedback is only one of a plethora of opinions in which I will be the final judge.

    • rickconti says:

      And as usual, your choir is music to my ears. You, of all people understand this.

      There are a lot of doctors out there. There’s no reason to put up with those who treat us like diseases instead of human beings. Run (or roll) to the nearest exit and find a new one. In the words of the great Smokey Robinson, “You better shop around.” Maybe then they will run out of patients before we run out of patience.

Now tell me what's on your mind...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s