Six Mistakes to Avoid as a Patient

Posted on: August 18th, 2016 by

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I’ve been thinking a lot about medical-related mistakes.

Not mistakes that doctors make, but those that we patients sometimes make.

While being diagnosed and treated for a devastating disease, patients can and do make mistakes. After all, a serious disease puts us in a hurly burly of medical decision-making and is tough medicine indeed. Now add to the mix one’s upbringing, world views, psyche, and peer pressure, among others. With so many factors affecting our decision making, it’s no surprise why our actions might lead to mistakes.

I made my share of mistakes as a cancer patient. After meticulously weighing my options — the way one might weigh objects on a scale — I would make my decision. Many of my choices were spot on. But….

Other times, I made mistakes.

Most of these mishaps could have been avoided, and so I’m sharing them with you. Here, then, are my top six mistakes to avoid when being a patient. I should know: I’ve made all of these mistakes, some repeatedly. These are not listed in any order of importance.

Speak up, don’t tough up, to medical professionals. A patient needs to inform doctors and nurses how he or she is really doing, physically and psychologically. Telling doctors you are okay when you are not is, well, not okay.

This was a huge hurdle for me, over which I tripped and left a trail of mistakes. When a doctor asked me how I was doing, I often said “fine” when I was not fine.

I initially lied to my doctors for a variety of reasons. I found myself trying to please the physicians and not wanting to bother them.

And I was prideful; I was always tough and strong and wanted to impress upon myself and my doctors that I had an iron-clad will and resolve. I come from a hardy family that deals with life’s problems through Spartan steely resolve and independence, stubbornness, and stoicism. A family that picked itself up by its own bootstraps when times got rough.

That’s why I decided to stay quiet about the horrific side effects from chemotherapy and radiation simultaneously. But these treatments were tougher than me. The truth is, doctors cannot read minds, and I got to a point where I admitted to my oncologist that I was ill.

Believe it or not, he was the first person who taught me to speak up to doctors. As I state in my book, when I finally told him I was sick, he told me that if I wasn’t feeling well, he needed to know about it. A nurse concurred by saying “If you need medication to alleviate the symptoms [of treatment], then you have to help yourself.”

Once I opened up to doctors how I was feeling physically, then I started telling them how I was feeling emotionally. And it led to a close relationship with my physicians that has lasted to this day. I remember telling my oncologist that I was stupid — when saddled with chemo-induced cognitive dysfunction, also known as chemobrain.

He held my hand and told me I was intelligent. This action meant the world to me and fostered a higher level of patient-doctor trust.

Reach out to others. I was also prideful in this arena. Other than regularly confiding in my brother and aunt, I initially did not reach out for emotional support. With their encouragement, I found myself walking through the doors of Gilda’s Club and calling the American Cancer Society. And these organizations helped me immensely, making me feel less alone.

Don’t rely solely on the Internet. I found that searching on the Internet via Dr. Google was a big mistake and often, after reading about worst-case scenarios, it’s no wonder why I was hysterical as I turned off the computer. I’m not saying patients shouldn’t research and get informed about their condition(s), but the Internet is a double-edged sword — an amalgamation of good information and deceptive information.

Don’t rush to make a treatment decision. While you don’t want to wait a long time to begin an action, you might have more time to think on a treatment plan than you believe. Oncologist Dr. Death tried to rush me into treatment options that, as it turned out, were wrong for me. Rushing into his treatment plan would have been detrimental for me.

Don’t compare your treatment to someone else’s. Truth is, illness is like a fingerprint, and a treatment that is excellent for one person might not be great for another.

Stay away from unsupportive support groups. Many support groups are just fine, but others can be downright harmful. At first, my support group seemed excellent, but as time passed, the individuals in the group did me more harm than good.

When it comes to unsupportive support groups, be willing to pull the plug.

These are just some of the mistakes patients should avoid, if possible to navigate the road ahead. I’ve just tapped the surface of the common mistakes patients make. Now I’d like to hear from you.

The Road Ahead

Is there anything that you would add to this list?

What is a mistake or mistakes that you made as a patient?

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10 Responses to Six Mistakes to Avoid as a Patient

  1. Caroline had this to say about that:

    I would add bring someone with you whenever you are facing a big decision. I have done this for me and helped others. Basically the patient makes a list (with help from their friend) of questions they want answered and writes them down. The friend’s job is to make sure all the questions get answered and writes down the responses. There is no need to go it alone.

    • Beth L. Gainer had this to say about that:

      Hi Caroline,

      This is a great suggestion! It’s great to have a good friend help the patient through the process of gathering information. And the friend might be able to provide insights that might not have occurred to the patient.

      Thank you for your excellent suggestion.

  2. Martine Ehrenclou had this to say about that:

    Nice blog, Beth. Your advice about unsupportive groups is especially important. When a patient faces a serious diagnosis, he/she might feel vulnerable. Groups that aren’t a good match for the patient might be harder to spot and then get out of.
    Thanks for bringing all of these important issues to light.

    • Beth L. Gainer had this to say about that:

      Thank you, Martine. While support groups can be wonderful, I had a poor support group who tried to boss me around and assert my doctor and hospital were incompetent. It was very hurtful.

      Thank you for commenting!

  3. Nancy's Point had this to say about that:

    Hi Beth,
    Important post. I have made many mistakes along the way, but we all do the best we can at the time, right? That’s what I still tell myself not only regarding my own cancer treatment, but regarding my mother’s as well. One thing I’d add is to not make the mistake of being hesitant to ask for help. Too often, we try to convince ourselves we are still capable of doing “it all” whatever that means. Ask for help. Not doing so can be a big mistake. And usually family and friends want to help anyway, so it’s a win-win for everyone. Thank you for this post.

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      You are right; we all try the best we can to make the soundest decision, and we do learn from our missteps.

      You are spot-on when it comes to asking for help. So necessary. That was another mistake I made; I was too proud or stoic to ask for others to help me. People do want to help, so we should let them.

  4. DinoMyers had this to say about that:

    Don’t bury your head in the sand because you are overwhelmed. I’m a physician and a breast cancer patient. I’ve seen too many people unable or unwilling to make any treatment decisions in a timely fashion. Sure it’s scary and it’s OK to slow down and take a deep breath and try to absorb it all but some people wait weeks or more before following up. studies have clearly shown that breast cancer patients have better outcomes when treatment is started within 30 days of diagnosis.

    • Beth L. Gainer had this to say about that:

      Hi DinoMyers:

      I’m so sorry that you are a breast cancer patient. As a physician, you have a unique perspective, also having cancer. You are right: although it’s fine to take some time to absorb and think about the cancer diagnosis, taking too much time can be detrimental. I never thought about how many patients must bury their head in the sand.

      You are spot on: cancer is scary. Thank you for your input.

  5. Rebecca had this to say about that:

    Sigh. I’ve made mistakes too. Wondering if speaking up too much can also be a mistake. That’s my issue, trying to find a sense of balance (and how to be a good politician and negotiator). I don’t want to be labeled as a difficult patient because these doctors are in charge of my care, BUT sometimes we need to advocate for ourselves. If not, who will?

    Relying on the internet is also an issue for me. There’s too much information out there, and most patients only share bad experiences, not the good ones. But I try to stay rational in most cases and not compare.

    Thank you for the helpful tips/reminders, Beth. It’s important to be patient with ourselves. We do the best we can. xx

    • Beth L. Gainer had this to say about that:

      Rebecca, we all make mistakes as patients. I guess speaking up can be perceived as too much if it angers doctors, but we as patients have a right to speak up for ourselves.

      You are right: we MUST advocate for ourselves because no one will do it as well as we can. And don’t get me started on the Internet! I’ve broken down reading all the possible bad stuff that could happen to me.

      I like the way you refer to your roles as a politician and negotiator. Very insightful.

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