Illustration. A group of young people sit together in a very friendly pose. Some have arms around each other. They look ... they project camaraderie. The photo is also superimposed as a puzzle and one piece of that puzzle is missing.

Health

LivAbility Magazine

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Health Literacy

It could save your life

Story by Tina Brown

It was a family dinner in Detroit when I realized my family didn’t talk about health. My uncle was babbling out loud but no one seemed to pay attention. When I asked why, my aunt nonchalantly mentioned, “He’s sick, he has breast cancer.”

I’m a breast cancer advocate. Why didn’t my family reach out to me for advice and support? Dinner went on, we passed around the potato salad. A month later my uncle was dead.

In 2010, my dad died from a heart attack. Again, I didn’t know he had heart disease until it was too late. I woke up a few weeks after walking my mother through grief to a beautiful sunny day.

Later that morning we got a call that my sister passed away from asthma, just two days before her 42nd birthday. I truly believe that she would still be alive today if we had just talked about her illness more often. Even though she had asthma all her life, we just didn’t understand the seriousness to be more supportive.

At the same time, my own health crisis was brewing. I was diagnosed with Multiple Sclerosis (MS). I shut down and isolated myself, and for the next three years I struggled, alone in my pain, hopeless and unable to communicate how I was feeling. I developed severe panic attacks and depression. Fear and stigma kept me from seeking mental help. I stopped doing things I enjoyed, like traveling. I even picked up drinking alcohol to cope.

Things were rough until Marion Kelly, an MS Society board member and community leader, connected me to a doctor at Mayo Clinic who specialized in MS. I joined an MS support group for women. While sharing our experiences, I confessed I was sad all the time, crying and always down. I thought I was losing my mind. Another member pointed out that all of my symptoms were side effects of a specific medication.

That’s when I discovered that isolating myself and not talking about my illness has led me to have a very low level of health literacy. Health literacy is the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.

I just took that medication and never thought to ask questions. Once I worked with my doctor to substitute another medication, I began to feel much better. It is so important to know and understand your health and the recommendations your health providers give you, especially the possible side effects and what you can do to manage your symptoms.

This is why I share my story. My journey has been a process and I know that God brought me out of darkness. Sharing brought me peace and gave me strength. I have courage to share my story and struggle because of the hope I have of helping someone else.

Today, I am living well with and managing my MS. When someone tells me that they do not want to talk about their illness, I say that understanding your illness better and connecting to resources and support is essential. Education allows us to better understand our symptoms and provides us with opportunities for better decision-making.

 


Tina Brown
Writer

Tina Brown is an advocate, community health worker and mental health first aid instructor. She has more than 15 years of experience in outreach, focusing on access to preventative health programs and working with diverse populations in both rural and urban communities.

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