Give Yourself The Gift Of Becoming Your Own Health Advocate
Several years ago I remember sitting down to read the paper when I suddenly noticed a headline that sent immediate chills up and down my spine. It went something like this:
PEOPLE WITH MULTIPLE SCLEROSIS LIVE, ON AVERAGE, SIX YEARS LESS THAN THE REST OF THE POPULATION
Several heart palpitations and many tears later, I telephoned my husband. The words choked in my throat. Then I summoned the courage to repeat the headline to him.
After a few seconds, as is always the case with my husband (thankfully), he quickly went into attorney mode. What publication was I reading? Who wrote the article? What was the author’s background and qualifications? How large was the study?
As the mother of a young child I could only see the emotional side of this headline, imagining what my early demise would do to my young son if my life were cut short.
My husband, thank goodness, relied on his knowledge and wisdom.
During what I call the Dark Ages of Multiple Sclerosis, there were no FDA approved medications for MS patients. In 1987, the year of my diagnosis, I had no electronic mail or World Wide Web to rely on for current research and findings. Instead I had to wait for snail mail to be delivered to my door to read about any medical news.
Fast forward to today, when the ability to hear the latest news is lightning fast.
These days I sip my morning coffee with a cup of the latest headlines via social media. I scan Facebook and Twitter, and in minutes I learn what’s going on in the world before newspapers or the morning talk shows report the top stories of the day.
How I wish I had the Internet available to me when that ridiculous headline was published. I would have had the ability to research the answers to my husband’s questions, educated myself about the study and its authors, and saved myself the heartache of believing (even for a second) the conclusion.
I’d like to think my naïveté was part of the reason I eventually decided to become a health advocate. I want to educate others on being their own best advocate by not automatically believing everything you read and/or hear.
NOTE: According to the Multiple Sclerosis Foundation (MSF), “People with MS have a life expectancy that is not really any different from the general population. The leading causes of death in the MS community are heart disease, cancer, and stroke. MS tends to affect quality of life, not quantity of life. There are unusual variants of MS than can be very aggressive and potentially shorten life, but these are not the norm.”
Here are a few quick tips on being your own advocate:
Be an active patient instead of a passive one.
Being knowledgeable about your illness will put you more in control of your own health, and will lessen any stress, anxiety and depression you may feel about your illness.
Silence is not golden when it comes to your health. Make a list of questions and then go about finding the answers. Speak to your doctor or nurse practitioner, find reliable websites for research, or consult peers that you trust.
Speak up for yourself.
If you don’t feel well, speak up. Call your doctor and be honest about how you feel. Bring a list detailing why you don’t feel well, along with questions you need answered. Don’t leave until you are satisfied with the care you have received. If you are unsatisfied with the treatment you are getting, find another doctor.
Know your rights.
As a patient you have certain rights. Today many doctors are rushed for time, so instead of feeling slighted or brushed aside, it’s important to know what rights you have. For example, you have the right to communicate your concerns, be treated as a whole person, and receive as much information as possible about the risks and benefits of current treatments. You should always be treated with respect and dignity, be allowed to convey your feelings and follow your own values.
If you want to learn more about Patient Rights please click here.
How do you self-advocate?
Do you celebrate your MS Anniversary?