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5 Ways to Be a Self-Advocate Even When You're Exhausted by Chronic Illness

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Six months ago, I ended up in a doctor’s office during a flare-up of symptoms with fatigue that made me feel as though I had to physically pull myself through the doors. I started a conversation with the doctor regarding my treatment plan, and I realized he was talking to me, not with me. He couldn’t carry on a dialogue with me.

I brought up my specific condition (did I mention I specialize in it?) and was assured it wouldn’t make a difference with what he had planned. After a few more attempts at discussing specifics, he started to raise his hands in an effort to physically stop the conversation. I was sick, I was tired, I needed help and I couldn’t fight anymore. I felt my willpower fizzle away, as my advocating voice was too exhausted.

He wasn’t going to listen to my concerns, but assured me he could help. In that moment, all the breath and fight left me and I said, “OK, we’ll try it.” Now, six months later, I am still working to recover from just two weeks of a treatment I stopped early. Apparently my body has a much stronger voice than my inner self does at times.

I have spent many moments since then shocked that although I have preached to my own clients to stay strong in these situations, I struggled to do so myself. I realize now that telling someone to advocate for themselves is an empty statement, especially to those drained from chronic illness. So I sat down and had a conversation with myself on how to manage self-advocacy when you’re too tired to fight back. Here’s what I came up with:

1. Bring someone to support you during medical appointments. Having support with you can be comforting and empowering, especially when you meet a new doctor. Have a hand signal or gesture ready if you start to feel uncomfortable so the person supporting you can chime in. Voice your major concerns with the person accompanying you before the appointment or show them your plan, so you’re on the same page.

2. Make a plan and prepare. Be well-informed about your diagnoses. Look for research articles or information from reputable sites on what is and isn’t working regarding the specialist you’re seeing. Write down what you do and don’t feel comfortable with regarding treatment before you go in.

3. Breathe. If the meeting isn’t going as you were hoping, take a few deep breaths. You shouldn’t feel rushed when trying to make decisions about your health. Try to slow down the speed of the appointment if you can.

4. Say no. If something doesn’t feel right to you, it’s OK to say no. Obviously, if there is something life-threatening, the conversation should continue. If things can wait a day or two, ask for some time to think about the treatment that’s been mentioned. Use that time to research, ask other professionals, or talk to others with your condition who have gone through the treatment.

5. Have a back-up plan. If you did not feel a connection with the practitioner, have another option in place. You may be able to talk with someone within the same practice to find a practitioner better suited to your needs. Do research on other practitioners in your area if this one doesn’t work out.

Your medical plan should be all about you. You should understand and be comfortable with all that is happening both to and around you. Don’t give up on your own voice, no matter how tired it may seem. The whole of you needs to be strong to endure illness.

Getty photo by Monkey Business Images.

Originally published: November 3, 2019
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