Deciding When to Share a Diagnosis Can Be Tricky
- “Walking In Memphis” singer Mark Cohn has revealed he’s been living with Parkinson’s Disease for about five years, but he’s only now telling the public about his health struggle as he needed time to “process” the diagnosis.
- Parkinson’s disease is “a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination,” according to the National Council on Aging. Symptoms for this chronic illness tend to worsen over time.
- Some people battling a disease like Parkinson’s or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid.
- It’s important to remember that choosing to share a health journey is a personal choice, whether you’re a celebrity or not, and the same goes for other private topics.
Parkinson’s disease is an incurable “brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination,” according to the National Council on Aging. Symptoms for this chronic illness tend to worsen over time.
Read MoreCohn explained on Instagram, “Hi everyone. Marc here… I feel like it’s time to tell you, my fans, what many of my colleagues, friends and family already know. About 5 years ago, I was diagnosed with Parkinson’s disease.View this post on Instagram
“I waited this long to tell you about the diagnosis because I needed time to process the unsettling news myself. But the good news is this: I’m doing everything I can to stave off Parkinson’s progression, and with those efforts, I have been able to continue playing shows for you all.”
He continued, “Some nights have been more difficult than others, but there were moments of healing and deep gratitude for my ability to stand at the microphone and continue to do the job I love so much.
“These past few years have been a time of reflection and a reminder of the preciousness of every moment. Thank you for making my music part of your daily lives. I feel like I’ve been a guest at your weddings, your delivery rooms, your first dances, and all the passages we all go through. This is just another passage… another opportunity to learn another dance.”
Cohn concluded by sharing that he hopes to continue performing for “as long as possible,” encouraging his fans to “come meet us on the road.”
We’re glad to see Cohn share a link to his website, featuring his upcoming tour dates, which will take place across the U.S., starting off in Arizona, Colorado, California, Connecticut and Rhode Island. He will also be doing shows in Massachusettes, New Hampshire, and Pennsylvania.
View this post on Instagram
Meanwhile, it’s been nearly 34 years since Cohn’s self-titled debut album was released on February 12, 1991, something he celebrated in an Instagram post last year, writing, “It was later certified platinum in 1996; featuring favorites such as ‘Walking In Memphis,’ ‘True Companion,’ and ‘Silver Thunderbird.’
“To this date, these are still widely requested songs during his live performances. We’d love to know which song from the album you are listening to today.”
The post promoted fans to praise the Gramma Award-winning singer-songwriter, with one commenting, “This album got me through some dark times in my younger days. It always filled me with such hope.
“Such a perfect album all these years later. Thank you for sharing it with the world.”
Another fan commented, “One of my favorite albums of all time. Always in my regular rotation, for decades now.”
“Love this album so much, it’s an absolute masterpiece. I feel my favorite track differs depending on mood and circumstance, but I think my instinct always brings me back to True Companion,” a third fan wrote.
In an earlier interview with Song Writing, Cohn opened up about what inspired him to write “Walking In Memphis,” explaining, “Where to begin? I was about 25 years old when I was summoned to Memphis by a woman I was dating. She later became my wife and even later became my ex-wife, so she did the whole full circle.
“She had a sense that I would love it in Memphis and that I should come down there. I don’t even know if she was aware of how connected I was to the music that had been made there. From soul music to gospel music to every kind of music… so much of it has its roots there.”
Understanding Parkinson’s Disease
Parkinson’s, it’s a chronic illness that affects the nervous system. As time passes, more symptoms start to show up in the body. Although there is currently no cure for this degenerative disease, researchers like those at The Michael J. Fox Foundation are trying to change that.
RELATED: Michael J. Fox, Who’s Lived a Decades-Long Parkinson’s Journey, Focuses on Gratitude & Joy
Medications can be taken to reduce and control some symptoms of Parkinson’s. Some of these medications include dopamine promoters, antidepressants, cognition-enhancing medication, and anti-tremor medication.
For those dealing with a disease like Parkinson’s on a daily basis, actor Michael J. Fox who was diagnosed with early-onset Parkinson’s in 1991 when he was just 29 years old previously shared some advice during an interview with AARP, saying, “Have an active life and do not let yourself get isolated and marginalized. You can live with it.
“People sometimes say that a relative or a parent or a friend died of Parkinson’s. You don’t die of Parkinson’s. You die with Parkinson’s, because once you have it, you have it for life until we can remedy that, and we’re working hard at it.”
“So, to live with it, you need to exercise and be in shape and to eat well,” Fox says. “If you can’t drive, find a way to get around. Maintain friendships. Don’t say, ‘Oh, I don’t have anything to say to Bob.’ Bob might have something to say to you. Just make the call.”
Prioritizing Mental Health & Acceptance After a Diagnosis
Signs and symptoms of Parkinson’s Disease can often seem innocuous and go unnoticed as they could potentially be attributed to other things. According to the National Institute on Aging (NIA), the four main symptoms of Parkinson’s are:
- A tremor in hands, arms, legs, jaw, or head
- Muscle stiffness, where muscle remains contracted for a long time
- Slowness of movement
- Impaired balance and coordination, sometimes leading to falls
Other symptoms can include:
- Depression and other emotional changes
- Difficulty swallowing, chewing, and speaking
- Urinary problems or constipation
- Skin problems
Symptoms of Parkinson’s can vary from person to person, as well as the rate of the disease’s progression.
“Early symptoms of this disease are subtle and occur gradually. For example, people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly, or that their handwriting is slow and looks cramped or small,” the NIA explains. “Friends or family members may be the first to notice changes in someone with early Parkinson’s. They may see that the person’s face lacks expression and animation, or that the person does not move an arm or leg normally.”
Additionally, symptoms often start out on one side of a person’s body or in one limb, a symptom that eventually takes place on the other side of the body or limb.
Most people with Parkinson’s also develop a distinctive way of waking, which incorporates leaning forward, taking small, quick steps, and minimal arm swinging.
Feeling stiff and/or having a tremor is often noticed by people with Parkinson’s after having difficulty sleeping, noticing a loss of smell, restless legs, and constipation.
The Choice to Share
The choice to share or not share one’s health diagnosis is a personal one for anyone facing the disease, even if they’re not a celebrity. While some people choose to share only with close friends and family, others post their entire journey on social media, create blogs and detail their treatments, side effects and doctor reports.
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According to Dr. Renee Exelbert, a licensed psychologist and founding director of The Metamorphosis Center for Psychological and Physical Change in New York, the decision to openly disclose or not disclose one’s diagnosis may be made more complicated for someone in the public eye, as they may feel pressure to serve as a role model, or to use their notable platform for the greater good.
She says public figures and celebrities are often held to a harsher standard, frequently having their appearance and behaviors rigorously evaluated. This might make hiding a cancer diagnosis more difficult and may also make disclosing a cancer diagnosis a greater burden to bear.
Also, just because someone is a public figure or celebrity does not spare them from judgment and the insensitive comments of others, especially while they may be fighting for their life.
Dr. Exelbert says the decision to disclose or not disclose a cancer diagnosis is a very individual and personal one in any case.
“Certain Individuals may feel as though their sense of self has been deeply impacted by their diagnosis, and they want to keep it private. At their core, certain individuals may struggle with appearing weak, vulnerable or sick, and particularly do not want to withstand the opinion or commentary of others while facing a cancer diagnosis,” she explained.
Dr. Exelbert also said some may feel they don’t have the coping resources to withstand scrutiny, whereas others may welcome the distraction and attention. Most importantly, however, she said there is no right or wrong approach.
“When an individual experiences trauma, which cancer certainly is, they need to be in charge of how their story is told in order to avoid further disempowerment.
“Thus, the decision to disclose or not to disclose should be wholly and rightfully left up to each individual.”
So, is one way more beneficial than the other? Dr. Exelbert says there are pros and cons to sharing.
“A positive aspect of sharing one’s diagnosis on social media is the potential to receive an outpouring of support, occasionally from people all over the world who have experienced something similar, and who may be able to offer useful suggestions,” Exelbert says. “Additionally, someone’s unique story may catch the attention of those performing clinical trials or offering unique treatment options, looking for participants.”
She said the ability to inspire countless people with one’s experience and story can also be a very powerful motivating factor.
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“Some individuals are looking to chronicle their journey, almost as testament to what they have experienced and to leave a legacy. It might additionally be beneficial to publicly share one’s story, as it can serve as a platform to educate others about cancer and its emotional and physical symptoms, as well as challenge stigma and change society.”
On the other hand, she says a con of revealing one’s diagnosis on social media is that people may share unsolicited stories of poor outcomes that they have either heard about, or experienced personally, many of which are unrelated to your particular situation. For example, some may tell you they know someone who had the same type of cancer, but died, which can be overwhelming and create undue stress.
“Additionally, once you share your diagnosis, you often have to manage the emotional experience of others,” Dr. Exelbert told SurvivorNet. “Sometimes, people will be very upset by your diagnosis and need you to take care of them or make your situation easier for them to deal with. This can prove quite difficult when you are barely in control of managing your own emotions. Further, many individuals might find it quite difficult to present themselves in such a vulnerable way on social media, as many often utilize this medium to garner accolades from presenting their ‘ideal self’ versus their ‘real self.’”
No matter what someone’s choice is when it comes to sharing a cancer diagnosis, the most important thing is that they feel support. For some, support from a few close friends, family members or professionals may be enough, while others need to feel connected on a larger scale. The last thing anyone needs is to be made to feel bad about that choice.
It’s important to remember that due to cancer treatment not being a one size fits all approach, it affects everyone different mentally, and not everyone feels comfortable sharing what they are going through with others in social situations.
Do I need to share my diagnosis with others? Psychiatrist Dr. Lori Plutchik weighs in.
Some people want to share their experiences as much as they can and others don’t want to tell anyone. Both of these approaches, and everything in between (maybe you only want to tell a few close friends about your diagnosis), are valid.
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explained to SurvivorNet in an earlier interview.
“How much information they should share and with whom they should share the information … everybody is different.”
Dr. Plutchik explains that some share the information widely, with family, friends, and beyond and feel comfortable doing so. “Other people are much more private about it,” she says. “And there is no one right way to handle this diagnosis.
“People should do what feels right to them. Going through a cancer diagnosis, through treatment, is often a very long process. And then if you also include after treatment ends where a person is in a kind of state of limbo, waiting to see if they are clear and get their scans. It may be three months or six months into the future. People are still dealing with uncertainty at that point,” she explains.
Dr. Plutchik also stresses that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Contributing: SurvivorNet Staff
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