If you know someone who has a rare disease, you probably want to help, but how?
Friends and family are a critical part of any patient’s support network. But it can be hard for those on the outside to fully understand the day-to-day experience of living with a rare disease or the diagnostic odyssey they might have been through. Relatives and friends “mean well,” but sometimes what they say and do actually adds to the burden.
A person can mean well and still do some harm in the process, explains Kathleen Bogart, associate professor of psychology at Oregon State University and an expert on psychological support for people with rare diseases.
“Psychologists call it social strain,” she said.
It’s a familiar experience for many people living with chronic conditions, rare diseases and disabilities: Someone who cares about them tries to be supportive or helpful, but misses the mark. Here are common missteps and some advice for getting it right.
Don’t ask “Have you tried…?”
By the time someone has been diagnosed with a rare disease, they’ve often spent years waiting for a proper diagnosis and then formulating a treatment plan with their health care team. Many will have already scoured the internet and waded through the scientific literature. Put bluntly: Don’t do a quick Google search and make medical recommendations. They’ve probably done the same searches and now have expert counsel in their health care team.
Still, Bogart said it’s common in the rare disease space for friends and loved ones to suggest treatments other than the one their doctor recommends. “Have you tried magnets?” Bogart jests. Now, the patient must defend their current treatment and fight the implication that they didn’t do their research.
“It just implies that the person hasn't worked hard enough to manage their condition.”
Don’t say “Try to stay positive!”
“You’re dwelling. Try not to obsess so much.”
“Be grateful for what you have.”
“Other people have it so much worse.”
“Look on the bright side!”
Pause if you find yourself tempted to offer any of this advice, which some patient advocates call “toxic positivity.” While it’s great to have perspective and cultivate gratitude, it’s not productive to suggest that someone simply change their outlook. In overwhelming situations, a person will need time to manage the crisis and then find their bearings.
Kate Bowler, a professor at Duke University’s Divinity School, went public with her story after being diagnosed with Stage IV colon cancer while in her 30s. She has a podcast, has authored two books and wrote a newspaper op-ed about what not to say to people who have a difficult diagnosis.
“The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried,” Bowler wrote.
You might be tempted to say “everything happens for a reason,” but Bowler disagrees and, in a small act of defiance, titled her book “Everything Happens.”
With rare diseases, sometimes it’s hard for friends and family to grasp the seriousness of the condition, especially when symptoms are not obvious, Bogart said.
“Invalidation is especially common because most people haven’t heard of a rare disorder,” Bogart said. “So if you explain your diagnosis to your friends or family or employer, they might not believe the full extent of its seriousness — especially if the condition is invisible.”
Do offer specific kinds of help
When a person is in pain, has low energy levels, or is busy with constant doctor’s visits, other parts of life can fall through the cracks. Basic chores like house cleaning, grocery shopping and running errands can get neglected — and start to pile up. Of course you want to help, but try to be strategic when you offer. If you just say “What can I do?” then the worn-out person has the job of figuring out what to request without knowing what you’re willing to do or what you want to do. Even though they’re ill, some people also fear they’ll still have to return the favor, like when someone gives you an unexpected holiday gift.
“A lot of times, your natural instinct is to say, ‘what can I do to help?’” said Deirdre BeVard, Senior Vice President of R&D Strategic Operations at CSL Behring. But from the other person’s perspective, they may be thinking, “you have just made it my problem to figure out how you can help me.”
Instead, try to listen well and offer specific help where it’s actually needed.
“It's more about hearing what they're saying and maybe what they're not saying,” BeVard said.
For instance, if you learn that someone hasn’t had a chance to go grocery shopping due to a busy visit schedule, you might offer to pick up specific items while you’re out. That allows for an easy “yes, please” or “no, thank you” that doesn’t require additional time or energy.
Do find reliable sources and do your research
If you want to know more about your loved one’s illness, seek out reputable organizations like the National Organization for Rare Disorders, Mayo Clinic, government health authorities and patient advocacy organizations, such as the Immune Deficiency Foundation. They’ll typically rank high in a Google search and have the most reliable information. Getting educated will help you understand the person’s condition and its symptoms. You’ll know that they can’t just “buck up.”
“It’s important for non-disabled people to take on some of the labor and onus here,” Bogart said. “Believe people when they tell you that they are hurting, or having an energy issue.”
Do just listen
It sounds too simple, but often the best way to support someone is to listen to them. The more you do, the more you’ll learn about their actual wants and needs. It’s not your job to offer medical advice or “cure” them, but you can play a very important role as a friend or family member.
Ultimately, it’s more than just symptoms that matter. Quality of life is about things like convenience of treatments, ease of access to care and other things that work together to impact daily life, BeVard said.
“It's a very different thing to understand the biology and the mechanisms of a disease than it is to understand the impact it has on one's life.”