Being Your Own Health Advocate

I may not be any doctor’s easiest patient, but I suspect they don’t have many who participate in the process more than I do.

I decided years ago that while they are an expert on medicine, I am an expert on me. If they discount the knowledge I can provide, I need to find a new provider.

The doctor who did not believe me

An early example is an OB-GYN check-up when I was in my early 20s. I was having problems sleeping. The doctor argued with me about the cause. He said 95 percent of sleeplessness is caused by anxiety. I knew that with me, this was not the case. I told him this. He didn’t believe me.

He did give me sleeping pills, and they helped for a while. But it was around 20 years later when I was finally diagnosed with restless legs syndrome (RLS) and was able to understand exactly why there seemed to be no rhyme or reason to why I couldn’t sleep.

Times are different now

That visit was in the early days of the internet and there wasn’t much information out there I could access to help me find a possible cause. Today there is. My nurse practitioner has told me not to Google my symptoms, as I am prone to do.

She’s right in that it often leads me off on a rabbit trail. She’s wrong in that sometimes I have been able to find a reason why I have a certain ailment or another.

Tips for becoming your own best advocate

So here are a few tips to help those who have been passive participants in their medical care. It doesn’t take much for you to become your own best advocate.

Know yourself

It amazes me how little attention some people pay their own bodies. I know what my body feels like on a normal day. That means I also know when it feels “off.” When that happens, I spend a few moments thinking about what has gone on in my life.

• Am I getting enough sleep?
• Am I getting enough exercise?
• Have I started a new exercise program or worked certain muscles harder than normal?
• Have I eaten well?
• What have I eaten?
• How is my fluid intake?
• When did the problem begin?
• How long has it lasted?
• Have I been under stress?
• Has there been a break in my routine?
• Am I in pain? Where is it located? Is it worse than it is other times? Is it dull or sharp?

You get the picture. All those things impact your life and your health. Pay attention to them. Take notes if necessary. Maybe keep a journal. It’s amazing how you often find patterns or see things that can be important for your doctor to know.

Choose your doctor well

• Are you comfortable talking with them?
• Do they intimidate you? Is it because of their manner toward you or yours towards them?
• Are they a good listener?
• Do they speak to you about your condition in terms you can understand?
• Are they forthright in discussing your condition, or do they act as though it is their secret?
• If you have a certain condition, such as restless legs syndrome, have you asked them how much they know about it? If they admit they don’t know much, do they have a solution as to how you can get the best care for it?
• Are they open to discussing possible reasons for the condition and treatments you have researched?
• Do they give you sufficient time?

Find helpful resources

A condition like restless legs can occur for multiple reasons. Everyone’s path is not the same as yours. However, the more you know, the more you can rule out to get to your best solution.

• Websites that are respected in the field
• Support groups of others with the condition
• Universities or medical centers where research is done on your condition – not only to keep abreast of their research but to see if there are ways you can plug in with them

Do not accept that there is no answer

It may take a while to find it, but be relentless in your pursuit.

Work on your communication skills

• Be upfront. Tell them what you mean and what you need.
• Be honest. Don’t withhold information that may help them care for you.
• Be detailed. Our bodies are one organism. Each part impacts the rest. Fill out health histories comprehensively.
• Remind them of pertinent details if you think they may have forgotten. They probably see a lot of patients in a day and may only glance at your chart before your visit. If there is something you believe is important for them to keep in mind, tell them.
• Be open about what’s going on and how you feel, physically and emotionally. They need to know.
• Be kind but firm.

Recognize the link between physical and mental health

Often the presence of illness leads to depression and anxiety. Be open to talking to a counselor or other mental health provider as you proceed down this path. Stress often makes a condition worse, which is something you don’t want or need.

No one should know you better than yourself

Feel confident that you are the expert on you, and you will find that not only are you a valuable member of your medical team, but you are your own best advocate.

Your medical team should acknowledge that, respect it, and encourage it. If they don’t, consider finding a new team that meets your needs.