7 posts tagged “patient advocate”

#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

Posted July 6th, 2017 by

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS.

#MoreThan MS

When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion.

But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor.

After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis.

I am more than my diagnosis.

When I told my boyfriend I had an incurable, unpredictable disease with no medications to curb my symptoms I held my breath, waiting for him to say, “Goodbye. See you around. Have a nice life.” Instead I heard, “We’ll get through this together. A life without you is no life at all.” We were married two years later.

I am a wife and a fighter.

Four years passed when we learned the happy news that I was pregnant. After two devastating miscarriages, we were overjoyed. At the time, I was driving with hand controls and walked with a cane. I was anxious about being a good mother despite constant fatigue, numbness and weakness. Then something extraordinary happened. As my baby grew inside my belly my hormones gave me a second chance. I no longer needed the cane and hand controls, I felt boosts of energy and the numbness and weakness temporarily disappeared. When our healthy baby was born, I called him my sweet angel.

I am a loving mother to a beautiful, happy son.

My relapsing-remitting MS reared its ugly head in those early days of motherhood. I learned how to manage my daily symptoms of the returning fatigue and numbness. I’d nap when my son napped and prioritized what I needed to do over what I wanted to. When walking became difficult I took intravenous prednisone (steroids) whose side effects were troublesome.

Eventually disease-modifying medications were approved and after trying the first two, number three was the charm. If you were diagnosed in the Dark Ages of MS, prior to medications, having options was Nirvana. As the old jingle said, better living through chemistry.

I am grateful.

Years passed and our son was preparing for college. I began questioning my future, wondering how to create a new career for myself. I dug deep to find what my passions were but it didn’t take long to find. I always loved to write and to help people manage their MS journey. I decided to go back to school to earn a certificate in patient advocacy. Then I married my newly acquired skills to my skills as a writer. That’s when I created my blog, AnEmpoweredSpirit.com, as a resource for patients to read and learn from my story, and to offer the latest news and information about MS.

I am a patient advocate. I am a writer. I love paying it forward.

As my blog grew and became recognized as an award-winning resource I began receiving offers to write for MS and health-related websites. I now contribute to three, moderate discussions for one and am the official blogger for a large international consortium whose mission is to improve the lives of those with MS.

I am a blogger, contributor and moderator. I am an active listener.

My professional life impacts me in countless positive ways, something I never imagined. My readers touch my heart when they share their joys and sorrows. I am deeply honored to hear their stories. Going from a blank screen to a message that touches others is magical. Helping the community makes all my efforts worthwhile.

I am grateful for this shared journey.

I am deeply humbled by loyal followers and eternally grateful for the love and support I receive from family, friends, colleagues and the people I’ve come to know both on and offline. I look to the future to find more ways to actively use my voice to continue making a difference in people’s lives.

 

I am more than my MS.

I am a wife, mother, daughter, sister and friend.

I am a writer, speaker, moderator and advocate.

I advocate for animal rights and love our two beautiful cats.

I am obsessed with classic Hollywood films, the arts and culture.

I love music and swoon when I hear Frank Sinatra or Ella Fitzgerald.

I am a lover of books.

I feel at one with nature because it brings me inner peace and serenity.  

I love to hike and knit.

I love gentle yoga and practicing gratitude and mindfulness.

I am an optimist who always looks for silver linings.

 

 

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“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

Posted February 24th, 2017 by

“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune.

The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed up with a piece in The Washington Post called “I told the truth about my sister’s obituary, so that others might choose to live.”

We recently talked with Eleni, who is an associate professor of psychology at the University of Wisconsin-Superior. She shared more about her sister’s life and struggles, the stigma surrounding mental illness and her own experience with managing depression.

You and your sister were really close. Do you have a favorite memory about her that you can share with us?

One of the things that somebody said to me at my sister’s memorial was that when you were with Aletha, it was totally okay to just really be who you were and let your freak flag fly. I think that was really true; Aletha took people as they were.

One of my favorite memories of her was when were adults and we went on a vacation to Harry Potter World and we were at Universal Studios. And at Universal they have the Jurassic Park theme ride. We were there in January, and the Jurassic Park ride was a water ride. So it was relatively chilly and we just rode it over and over. We stayed at a park hotel so we were allowed to skip to the front of the line. We were soaking, it was absolutely freezing and we were sitting in the ride being like, “Oh this is so lovely” – just being really silly. It was a really fun experience and it just felt nice to be with my sister in that way.

When you started “telling the truth” about how Aletha died to family and friends, how did people respond?

My family is relatively small — my parents and I, and then we have some cousins, some aunts and uncles. But we aren’t a terribly a close, close family. My parents were on board right away…it wasn’t something that was surprising to them. And for me, personally, I was in a lot of shock, so it seemed like the natural right thing to do. A lot of people were really, really surprised. When I told one of my friends, she at first didn’t believe me.

So a lot of times I think people were just in disbelief, but that might also have happened if Aletha had died in a car crash or something. In general, I think from my friends and her friends and our family, there’s just an outpouring of love for Aletha and my nuclear family. My coworkers were just incredibly supportive. And then I started hearing from people who’d read the obituary, and they were all just wanting to be heard. I think people don’t often listen to people who have depression or are suicidal or have survived suicide attempts.

And how about when your essay was published, what kind of feedback did you get?

Being a public employee, it was very easy to find my email address, so I got between 400 to 500 emails from people I didn’t know and probably about that many Facebook messages from people I didn’t know. It really hit something. There was something there that people really wanted to talk about – suicide and depression – and I think this gave them an avenue to either start the conversation with a stranger or hopefully to talk about it in their own lives.

What do you think needs to happen so that people can have open, productive conversations about suicide and depression? What’s standing in the way?

I think a lot of it is: people don’t really feel safe bringing it up because they think that there is going to be some judgment, and in some non-guarded moments, I have heard of some judgments.

My friend is an English teacher, and once a week they’ll read articles from the news and the students will write reflections on it. And so she did that with some of the coverage about my sister’s death. And it was really interesting because the students didn’t ever think I was going to read it. And some of them were really beautiful about the need to reach out and how they really want to support people, but then there were some that were like, “Well, her family must have known something.” Or, “I find it hard to believe that if they really cared about her they wouldn’t have seen this,” or “There must have been something else going on. It couldn’t have just been depression – depressed people don’t kill themselves.”

And so I think people hear that, either casually from friends and family or something else, or they hear the message that suicide is selfish or depressed people just need to “snap out of it.” I think that people are aware that there is a lack of compassion and lack of understanding and empathy for people that deal with those issues, and so there isn’t a safe place. Because if you’re already suffering and already struggling, and you know that acknowledging that is just going to increase your suffering, you’d be crazy to ask for help.

What other kinds of stigma and misunderstanding surrounding depression and mental health do you think needs to be addressed?

I think it’s just something we have to get more practice talking about because if you think about the sheer number of people who have lived with mental illness in this country it’s really staggering…that in any given year one out of five people experience mental illness. Who that one is out of five, is probably going to rotate. There are people that are going to live with it their whole lives but then there are people that might experience depression and anxiety for a year, and then go into remission.

And I think it’s just a real fear and real sense of isolation. The mental illness plays into that as well. Part of what feeds mental illness is this desire to keep it secret because you don’t want other people to find out, and that kind of stuff. So it’s really just a perfect storm of disordered thinking and the stigma together that just makes it really difficult for people to come out. So I think there needs to be a national-level dialogue about it.

And that was one of the reasons why I just absolutely loved Carrie Fisher. She was bipolar and she didn’t really care who knew it, and she saw it as a part of her and not something she should be ashamed of, not something terrible. I really admired her, and even though I didn’t know her, that loss hit me. Because here you had someone who was smart and funny and engaging and open about it. I think we just need to have more people say, “This is my experience with mental illness. I’m not crazy, I’m not bad, I’m not going to do anything horrible, I’m just really suffering.” Hopefully other high-profile people will step up and say, “This is something I struggle with as well.”

And that’s one of the reasons why I try to advocate for person-first language: you’re not a “depressed person,” you’re a “person with depression.” Embracing person-first language is really critical to helping people see you’re not just bipolar disorder, or schizophrenia, or depression, or OCD —  you’re a whole person, and this is one part of who you are but there is so much more to you that that. I think that’s where suicide works its way in. The depression or mental illness takes over to point where the person loses their sense of personhood and overwhelmingly identifies with the disorder instead of their shared humanity.

You’re also living with depression — how do you cope with depression’s “lies” in your own life?

For me, a lot of it is managing through routine. The way that my distorted thinking happens is, “Well, it doesn’t matter if you don’t exercise today. It doesn’t matter if you don’t shower today. Everybody deserves a break. You can just take this one day off.” And the problem is once that happens, inertia sets in, and I’m less likely to do it the next day and the next day.

So it’s really critical for me to say that every single thing I do in my life, especially when I’m struggling, matters. It matters that I decide to get up and eat breakfast. It matters that I decide to eat a healthy lunch, that I eat dinner. It matters that I walk the dog. It matters that I do something other than just sit around and watch Netflix.  I think that’s the lie: “You deserve a break, you deserve to not have to worry about anything.” That just makes it so much worse. For me the lie is just: let the depression win for a day. And then tomorrow you can get back to being good…it just keeps getting pushed further down the line, so I’m not engaging in my self care, I’m not doing anything to show myself that I matter or anything. So that’s where it can really spiral in a bad way, if I’m not doing anything, if I’m isolating myself from my friends and not seeing anyone as much, not talking to people. And it just takes me to a really not great place.

What kind of advice do you have for people living with depression who use online communities like PatientsLikeMe?

I think the best thing that people can do is to figure out what makes them feel a little better. And commit to doing that for themselves. When I think about my sister and when I think about myself, I’m always willing to do something nice for my husband or my parents or my students, always willing to try and help them, but I’m not always willing to do that for myself. So I know that nothing will make me feel better for several hours than going and getting my heart rate up for a half hour, 45 minutes, an hour. I know that nothing in the world will be better. But then I’m like, “Oh, well this student really needs the support,” or something else, so I neglect that. I think sometimes it’s okay to say, “I really have to do this for myself, because otherwise I’m going to go to a not great place.”

Everyone is really good at advocating for the needs of others, but identifying your own needs and speaking up for them is probably the most important gift you can give yourself, because then you can start to counter this idea that all you are is your mental illness. You’re starting to do something for yourself, you’re starting to prioritize yourself and prove to yourself that you really matter, and I think that’s really critical.

After my sister passed away, one of her friends said that he felt that Aletha was like a watering can. She was always watering her other friends and nourishing them and helping them grow, but all of that was depleting her and taking away some of her resources. So once her water ran out, she didn’t know what to do next. She didn’t have a way to deal with that and cope with that. You have to prioritize yourself.

 

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