Advocating for Someone Else's Health When You’re Also Ill

A couple of weeks ago my mom fell and broke her leg. I’ve been her caretaker for at least seven years, and for four of those, she’s lived with us. So when she fell at 3:30 in the morning, I was with her. Turns out the fall didn’t cause the break. Most likely her leg broke due to undiagnosed osteoporosis and she fell as a result. Either way, she’s on the road to recovery, but that first week in the hospital left us with some very not-so-positive experiences.

I’ve been mom’s advocate for longer than I’ve been her caregiver. I joke that my superpowers are phone calls and paperwork; I used those powers to help her find low cost medicine when “pre-existing conditions” kept the insurance she was paying for from covering her diabetes medications. When she could no longer work, I pushed paper and found advocacy in the hospital to get her on disability, and I’ve been managing her health ever since.

Mom knows I have fibromyalgia. She lives with me, so she sees the good days and the bad. She hates adding more pressure and we’ve had long talks about how I help her because I love her and I take care of myself. However there are times, like the past couple of weeks, when the advocacy really requires balancing my own care with hers. So here are three tips for advocating for someone else and managing your own condition.

1. Know Your Paths To Get Results

Most hospitals have to have a patient advocate or someone in that role. If you go to a hospital’s website, there will usually be under the “Patient’s Rights” section, someone to reach out to. There’s also a listing of the rights a patient has, such as to direct treatment as much as possible and to be treated with respect. Know who to call in the event these rights aren’t honored. Even knowing where to get the information can be a stress and worry saver when you’re faced with a situation and emotions are running high.

2. Ask for clarification

“Is this still the plan?”
“This is what I understand the care to be.”

These sentences will show the medical staff that you’re listening and taking in information and asking for clarification. This will help, especially when fibro fog begins to take hold, to clarify the situation for you and for the patient.

3. Ask for help

In a very candid conversation with the “transfer of care” specialist for my mom as she moved from the hospital to a rehabilitation place, I was honest with her. I told her that I was all too familiar with this hospital and medical system refusing to treat my chronic pain and because of that my pain levels are seven to nine every single day, and that I did not want my mother to get into that situation. I asked her to help me ensure that my mother’s issues with the stay in the hospital were taken care of and appropriate measures taken. I asked for her help to ensure that this never happened to another patient again.

Being in the position of being an advocate for someone when you’re also handling your own chronic illness can be challenging. However these three tips can hopefully make it easier and you and help you focus on what’s important: yours and your loved one’s health.

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Thinkstock photo by Katarzyna Bialasiewcz

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