3 posts tagged “treatment sharing”

Member Christine’s Instagram takeover for World Lupus Day

Posted 4 months ago by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

Join PatientsLikeMe today to connect with Christine and thousands of others living with lupus.

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“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book

Posted 7 months ago by

“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it.

Advocating for “Onlyness”

Nilofer has been championing the idea of “Onlyness” since 2012, when she first introduced the term in her Harvard Business Review-published book 11 Rules for Creating Value in the Social Era. “Onlyness” is the idea that “each of us, every single one of us can add value in the world. Not just the credentialed people, not just the educated people, but each and every single one of us.

“The young, the sick, the neglected – these are not typically the people whose ideas are heard.” She says. “Most often, whether ideas are considered or dismissed is based on who contributes them, and how powerful their sponsors – not the ideas themselves – are.”

Raising a collective voice

Nilofer studied over 300 examples of companies bringing “Onlyness” to the forefront and chose 20 to feature in her book, including PatientsLikeMe.

“PatientsLikeMe is allowing the levers and power systems to benefit the user,” she says. “It’s also letting users actually say ‘here’s my experience with this medicine’ which is an incredibly empowering thing. It lets us compare notes, it lets us not feel alone, we start to ask better questions, we can help each other. So of course it’s going to change the healthcare system because in the past the doctor was the expert, but you’re the only expert of your own life and your own body.”

The book dives into how current systems, from healthcare to business and more, are set up in a way that keep the “experts” in charge. Nilofer, however, explores and reveals the power of what she refers to as a “distributed network” where each of us can gather around a shared purpose, and, by connecting our shared will, become powerful enough to make change happen.

Turning up the volume

In the book, Nilofer shares the story of Ed Sikov, a PatientsLikeMe member living with Parkinson’s disease. Ed visits PatientsLikeMe every day, as he explains, because it can “help the next guy.” By sharing about his treatments, symptoms, side effects and more, he’s joining a powerful collective voice that demands to be heard.

“When I share information, I help others,” says Ed in the book. “It might become clear that one treatment works better for people my age, or that simple shift of when I take a drug changes how I respond. Sharing my own data lets all of us have more insight.”

Harnessing your “Onlyness”

Nilofer says she wrote this book “to try to talk to how much we screen people out based on titles, based on packaging…and we do it to ourselves, too. 61% of us tell ourselves that our own opinions and ideas don’t count. We negate ourselves instead of celebrating that thing only we can bring. We end up seeing ourselves through the boxes that other people see us in.”

So how can you own your “Onlyness”? “It’s about claiming your own life story as relevant,” Nilofer says. “The first step of claiming “Onlyness” is to claim that spot in the world where only you stand. It’s to accept, and celebrate and embrace all of it, whatever it looks like, even if it doesn’t look like conventional thinking. That’s how really new ideas come to bear.”

You can find out more about The Power of Onlyness and Nilofer Merchant on her website, nilofermerchant.com.

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