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Power to the Patient

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As a patient coping with a health event, you have to deal not only with your body changing drastically — sometimes suddenly and sometimes gradually — but also with a significant loss of self.

Your independence is often compromised, and family members cluck and fret and frequently talk over you to your doctors. They mean well, but sometimes your caregiving team may be hindering you more than helping.

Maintaining Your Sense of Self

Despite the circumstances and stress of being ill, it is vital that as a patient, you maintain your sense of self.

You are not helpless. You are not powerless. You may be weak, debilitated or compromised, but even at this difficult time, you can and must draw your boundaries and remember that you are still empowered to make decisions, despite what others may say.

You are entitled to determine your treatment and the details of your convalescence.

Spend Your Energy Wisely

During your treatment, you may feel obligated to do things you don’t want to do.

  • If you are in recovery, your precious energy should be spent doing what gives you strength, rather than on anything that diminishes it.
  • Do not feel you have to talk to your aunt when she calls or have visitors when you would like to be alone.
  • If your end is near and you are preparing to go, say your goodbyes on your terms.
  • It’s okay to say no. It’s okay to disappoint people.

This is your time, and you must do what is right for you.

As a patient, remind yourself and others that your needs are important and valid, especially when you are at your most compromised.

We Want to Hear Your Story

How have you “maintained your sense of self” as a patient? How have you cared for yourself and sustained your emotional health in difficult times? We’d love to learn more about your thoughts and experiences. Please share.

About the Author:

Amy Levine is the author of "The Funeral Is Just the Beginning: Everything You Need to Do When a Loved One Dies", a practical guide for what to do and how to do it. Learn more at Last Chapter Concierge.

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  • By Jennifer R

    After learning I had MS (Multiple Sclerosis) I was very scared to tell people about it. I didn’t want them to judge me or pity me. At first I decided to only tell my parents and a couple close friends. Although they were all supportive, I still wasn’t ready to tell others in my circle. As I started having other health issues, such as infertility and chronic back pain, and trying to deal with a long history of scoliosis, I decided it was time to talk to a counselor. I had talked to one before but never about all my health issues. The best piece of advice she gave me was “tell everyone you know and trust.” I was very reluctant to do it at first, but as I started having diffficulty with things I found that there was NO judgement. There was no pitty. There was none of that because I told my friends and family how I needed to be treated. I told them if I needed help I would ask. If I needed to talk I would talk. Everyone has been great. I spoke up and told everyone what was going on and how and what I wanted or needed. It was the best piece of advice I have gotten in a long time.

    When it comes to my doctors, my approach is a little bit different. As a Nuclear Medicine Technologist, I know a little about a whole bunch of things. Depending on the doctor this could be helpful or problematic. 1. As a patient I make sure I know what’s going on the best I can before I go into a procedure or dr. visit. 2. I am NOT afraid to ask questions. 3. I am not afraid to question the doctor’s decisions or ask about an alternative I found. This last one can be a bit hairy for some doctors. I find that as long as I am being respectful and truly concerned when I ask questions, they are generally willing to listen to my arguements. The doctors that just want to dictate to me and don’t want to listen to my side of things, well…they get the pink slip! this is my health. And although the doctors are the expert. THEY DON’T KNOW EVERYTHING!!

    Never be afraid to ask questions. Never be afraid to ask why!! Make sure you are well informed. Walk in knowing and see if the doctor comes up with the same thing you did. If he doesn’t then start asking why! This is your health. Your health is your responsibiltiy not the doctors! The doctor’s responsibility is to help you make an informed decision.