How, when, where is best?
After being told that you have HSP, it is normal for the mind to go into overdrive. A thousand questions pop up, including ‘should I tell my partner, kids, family, friends, colleagues, employer ….?’.
And if you do decide to say something, what should you say … how … when … where?
These are far from trivial questions. There are instances where raising and discussing the topic of HSP has led to serious rifts and estrangement in families, especially between different parts of extended families.
from an article in Brain&Life, American Academy of Neurology, Feb/Mar 2022
Karen Jaffe, an obstetrician-gynecologist from Cleveland, OH, reacted to her 2008 diagnosis of Parkinson’s disease by telling her husband that night but didn’t tell their daughters for months. She kept it secret from siblings for a year and many friends and colleagues for three years. It was easy to do, as her condition was well controlled with medication and she had no tremors. She was worried about being forced to leave her practice (she eventually retired in 2013) and was haunted by a drawing from the 1800s of an old, stooped man with Parkinson’s disease—she didn’t want people to think of her that way.
Receiving a diagnosis of a serious neurologic condition is an intensely personal experience. People may feel shock, confusion, and a sense of loss. There’s so much to process, intellectually and emotionally. One of the first decisions people often confront is whom to tell and when. Most likely they’ll tell their life partners early on, but what about young children living at home or adult children? Then there are siblings, parents, other relatives, close friends, casual acquaintances, friends at work or clubs or school, and connections on social media.
You don’t have to decide right away about disclosing your condition. “You are in control,” says Gary McClain, PhD, a mental health counselor in New York City and author of After the Diagnosis: How Patients React and How to Help Them Cope. “You own it.” Psychologists recommend that you wait until you come to terms with your diagnosis and feel emotionally ready to tell others.”
That’s not to say you should keep it a secret, especially for a long time. Opening up requires vulnerability, but letting friends and family know what’s happening has many potential benefits.
“People can’t help you if they don’t know what you’re facing,” says O’Donnell-Ames. And hiding a diagnosis may perpetuate the stigma around the condition, says Jaffe, who wishes she had reached out to others earlier. “I should have told people up front,” she says. “There’s no shame in having Parkinson’s.” And she now realizes it would have been good to befriend another person with Parkinson’s a lot sooner.
Three main risks of disclosure are stigma, exploitation, and overreaction, says Winston Chiong, MD, PhD, associate professor at the Memory and Aging Center at the University of California, San Francisco. “Many neurologic disorders are associated with a great deal of stigma and a loss of social standing in the eyes of family members and others who are important,” he says. “Patients may be worried about being treated differently.”
That’s one reason why he recommends thinking twice about broadcasting a condition on social media. “There’s a big difference between Facebook friends and real friends,” he says.
Another fear is that family members or friends may become overprotective and limit a patient’s freedom. “When you have a mobility disorder,” says Dr. Chiong, “your family may be terrified that you’ll fall, and [they may] discourage you from walking or doing other things you can do. Patients who aren’t active can become deconditioned or isolated, which affects their outcomes.”
The best solution is to tell people close to you relatively early. “While disclosing too broadly can add to the stigma, telling family and friends can mitigate stigma—especially self-stigma, which can be worse if patients feel they can’t talk about their diagnoses with people they know and trust,” says Dr. Chiong.
Share Genetic Information
If the condition has a genetic component, says Cecchi, “it’s your responsibility to disclose it to family members so they can make their own independent and informed decisions about whether to get tested, which may affect what careers they pursue, whether they start families, whether they make large purchases, and when to retire.”
Disclosure – how, when, where?
Many people may refrain from talking about their conditions because they don’t want to be burdens to, say, adult children with their own stresses. But that can backfire. “Some people will feel unappreciated if you don’t tell them,” says Dr. McClain, “and you’re limiting the support you’ll get during an important emotional time.” Knowing about a loved one’s condition, and helping, may make others feel better, too. “Your family benefits by being able to help you,” he says. “It benefits us to give—when you give, you receive.”
To disclose a diagnosis, some people may want to gather family members together and let them all know at once, while others may feel more comfortable reaching out individually. “It doesn’t need to be a big production,” says Cecchi.
You also could use a digital platform such as Caring Bridge (http://caringbridge.org), a website where people create health journals to share with specific individuals. Support groups are another venue for opening up, finding resources, and getting emotional support.
Dr. McClain often suggests a script for people who are still adjusting to their diagnoses. They could tell others: “I am going to talk to you about something I’m dealing with. I don’t need advice, and you don’t need to fix it or share words of wisdom. I just need you to listen. If I need help, I’ll ask for it, so just be there for me.”
Be aware that not all reactions will be helpful. Some people may say inappropriate things or rush to solve the problem with advice about self-help or alternative medicine. Others may feel overwhelmed and not want to engage. They may say something like “You’ll be fine; let’s not talk about this anymore,” or lecture about not being negative.
And it’s okay to ask for help—the more specific the better. “You can say, ‘I want you to go grocery shopping for me or to make me dinner—pick one,’” suggests Cecchi. One friend or relative may be good for sending an uplifting text each day; another might do research; a third might just cry with you on the phone once in a while.
SOURCE: Brain&Life, American Academy of Neurology, Feb/Mar 2022
How to Share a Diagnosis with Friends and Family
By Bob Barnett