The Empowered Patient: Your Greatest Resource Lies Within

Posted on August 29, 2014 by MSAA

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Connecting through Storytelling

Posted on February 24, 2014 by MSAA

By: Matt Cavallo

When I was first diagnosed with multiple sclerosis, I was afraid. I didn’t want anyone to know that I had this potentially disabling disease. I was afraid to tell my boss for fear of losing my job, and I was afraid to tell my friends because I didn’t want them to think of me differently. I started pushing away the few people in my life who did know what I was dealing with, because I was afraid of them seeing my condition progress. This included my wife. I was stuck in a deep depression. For all intents and purposes, my life post-diagnosis was being spent lying in my bed watching daytime reruns.

This all changed when my neurologist at the time in Boston asked me to come out and speak at a patient event. She wanted me to tell them the story that I had shared with her about how I got my dog. I was nervous. Not only had I not been telling people about my MS, but now I was going to be up on a stage talking to a big group of strangers about an intensely personal struggle that was raging inside me. That night came, and it changed my life forever.

In an instant, surrounded by a group of my peers living with multiple sclerosis, I realized that I wasn’t alone. By sharing my story that night, I felt a weight lift from me, as the people around me opened up and started sharing their story, too. I was no longer ashamed, embarrassed or depressed that I had MS and was not the man I used to be. Instead, I felt empowered and was embracing the opportunity to connect with others on the most personal of levels, united by this MS tie that binds us.

Sharing my story has opened up doors to places that I had never dreamed of before. It has taken me from coast to coast, putting me on TV, exercise DVDs, newspapers, radio shows, and even onstage in Las Vegas. Had I given up on myself back when I was diagnosed in 2005, I wouldn’t be living these dreams and ambitions that I never knew I had. While there have been many personal accomplishments since my diagnosis, it is always the personal encounters that I value the most.

This is just one example of thousands I have experienced on my journey:

At a restaurant next to the Savannah airport on one of my recent trips, I sat down next to a man who I would say was probably in his twenties. I turned and looked at him and asked, “What is good here?”

“Try the Tybee Island, and you can’t go wrong with a burger,” he replied.

I took his advice and complimented him on the local beer recommendation as we started talking. He was a pipefitter on a job assignment from South Carolina. He was missing his wife and little boy, but still had some time left on his job.

“What brings you to Savannah?” he asked.

“Storytelling,” I replied.

He was intrigued by my answer, so I explained to him that I go around to hospitals and talk to doctors, nurses, therapists, and other clinical staff about the patient experience-and that I also speak to patient and caregiver groups.

“So,” he says, “what kind of doctor are you?”

“I’m not,” I replied, “I’m a patient. I tell them the story of how I got my dog.”

He was captivated and wanted to hear the dog story. So, I told him the story of my symptoms, that I lost my ability to walk and go to the bathroom on my own, and how my diagnosis of MS led to my wife getting me a dog for my birthday, and ultimately my promise to walk him every day. I told him that it had been eight years since then, and I have still kept my promise. I could tell by the look in his eyes that he needed a story like mine on that night.

My food comes, and I order another beer. We go on to talk about the kids. He settles up his tab, shakes my hand and pats me on the back.

“It was great meeting you,” I said. He returned the sentiment.

I finish my burger and beer, then I ask the bartender for my bill. She turned and looked at me and said, “That man that just walked out paid for you and the tip.”

My jaw dropped. I wanted to thank him and say that it wasn’t necessary. I ran out to the parking lot, but he was gone. I couldn’t believe that a complete stranger, a kid in his twenties and someone who had never heard of MS, would surprise me with that selfless gesture. All I did was share my story with him.

Encounters such as this have reinforced to me the power of storytelling. Your story is your power. Many of us living with multiple sclerosis get stuck in the same depressive rut that I experienced when I was first diagnosed. When you are able to open up and share your story with others, you will realize that you are not alone. Each one of us living on this planet has some cross to bear. Ours just happens to have a name: MS. Sharing may make you vulnerable, but you’ll also find that when you open yourself up to others, you truly see the good in people. To the stranger in Savannah, thanks again for the burger and the beer. I will pay it forward.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

I’ll Meet You on the Internet: Social Media is the New Support Group

Posted on January 29, 2014 by MSAA

By: Jeri Burtchell

When I was young, I would roll my eyes whenever Dad began a sentence with “back in my day.” Whatever he was about to reveal was sure to be irrelevant now. Times change and one generation’s “cutting edge” becomes passé to the next. And now, when I reflect on my early life with MS, I find myself sounding just like my dad.

Back in my day, when I was diagnosed in 1999, I didn’t have a computer, let alone internet. If I wanted to find out about my condition, I had to go to see my neurologist. Who else had the answers? There was no Google to ask, no “Web MD” to consult about symptoms.

Back in my day, if you wanted to connect, you went to a real support group and talked to one another face to face. We weren’t sitting in front of glowing screens connected to typewriters, pouring our souls out to faceless strangers. I would have laughed at such a prediction much the same way my grandparents would have reacted to the concept of television.

With every new iPhone release or tablet launch, technology is evolving, redefining our relationships and how we interact. In a way, I am melancholy for a time when “social” meant playing board games or telling stories round the campfire. Not to worry, though, no doubt there’s an app for that.

But then I consider how the internet has empowered the chronically ill, and technology is easily forgiven for its domineering takeover of everyday life. Housebound no longer means isolated. Loneliness is banished by the wi-fi connection.

From blog posts like this, to message boards, to Twitter and Facebook, we are all interwoven now, able to instantly respond to what we read or see. We exchange ideas, comfort each other, help each other find answers, soothed by the reminder that we don’t battle this disease alone.

From the time I blogged my clinical trial back in 2007, I saw firsthand how my words, launched into cyberspace, connected me to others: a pure and unbridled connection of thoughts. They weren’t clouded by self-conscious worries of how others might perceive me. And let’s face it, who doesn’t love going out of the house “virtually,” not having to worry if your clothes match or hair is brushed?

In fact, I’m sitting here in my bathrobe at 4 a.m. writing this blog post, connecting with you on my terms, at my time. It works both ways since you are reading this at your convenience, on your terms — and maybe in your jammies, too. The freedom and control is undeniable.

No matter if you are a ballerina who can stand en pointe or your soul does a dance from a chair … we can all fly free here, expressing ourselves online.

For a time, I thought my internet MS social circle was all I needed for support. Then I had an opportunity to be a patient speaker for Novartis, sharing my Gilenya experience with others. Interacting with group after group of MSers around the country, I was honored to meet new people, all so different from me, yet we all have MS as a common denominator.

That face-to-face connection allowed me to hear the inflection in their voices, read the emotion in their eyes–something the internet has yet to replace.

I am no longer a speaker for the drug, but I was so moved by that experience that I started a support group in my county. I was hoping to bring that personal connection to those in my community who are living with MS. So, I have come full circle and realize interacting in person is still an important piece of the social puzzle. Nothing can take the place of a real hug from someone else who “gets it”. No amount of emoticons can compare.

But when you live in the sticks, or your condition makes it hard to get out, the MSers of today have something we didn’t have–back in my day–people who know exactly what you’re going through and they’re only a keyboard away. The internet is full of support.

Sometimes I wonder what Dad would think of us connecting on the internet. I’m fairly certain that if he began his reply with “Back in my day” it would probably end with “I couldn’t have imagined anything as empowering as this.”

References:

http://www.gilenyaandme.com/

http://www.healthline.com/health-slideshow/multiple-sclerosis-support-groups#1

FOLLOW MSAA ON: