The crisis caused by COVID-19 affects different groups of people in different ways. One thing is certain: each of us is being forced to adapt to rapidly new circumstances and adopt new behaviors. For people living with a rare disease—many of them children—this virus makes life even more precarious than it already is. If you know someone living with a rare disease but are not sure how to help, we’ve compiled a list of suggestions below with explanations.
Support Their Immune System—Keep Your Distance
Although not all rare diseases include a weakened immune system, behave as though the person you know has one. People living with a rare disease often require frequent medical appointments and therapies; many doctors’ offices and hospitals may have patients in the waiting room with COVID-19 or the flu. As a result, people living with a rare disease are potentially being exposed to the virus more frequently than those who can stay at home.
So, keep your distance. You can also call or send a text message. You’re not being rude at all. In fact, you’re being incredibly mindful and respectful.
Do Not Offer Health Advice
It’s common for many of us to share health advice with people we know are sick, especially when we are being inundated with an overabundance of health information on COVID-19. However, a person living with a rare disease already engages with numerous specialists and experts. A person living with a rare disease, especially in stressful times like these, doesn’t need to be told how to manage their health better. In fact, some people living with a rare disease may already be very skilled at managing against exposure to germs and coping with self-isolation.
Instead, ask how they’re doing. Maybe they’d rather talk about trying to keep the kids occupied while school is out. If you’re a teacher by day, for example, expressing concern for a friend with a rare disease, then that conversation would be much more enjoyable and helpful!
Rare Disease Patients and Their Families Are Already Attuned to Managing Their Condition
COVID-19 is one more confounder for patients and their caregivers to navigate. Not much unlike professional athletes, they have laser focus on themselves, their condition, and everything that may affect it. In these unprecedented times, we as supporters are developing more awareness and understanding and should strengthen our commitment to these key areas:
- developing therapies for rare disease,
- enabling more supportive care resources for patients and caregivers, and
- understanding the day-to-day experiences of family members, friends, and colleagues with rare disease.
During the COVID-19 pandemic, something truly meaningful we can all do is learn more about rare disease and get involved with patient advocacy. Here are some links to get started:
- Cure FA (Friedreich’s Ataxia)
- International Foundation for CDKL5 Research
- LouLou Foundation: Tackling CDKL5 Deficiency
Remember That Social Isolation Affects Mental Health
People living with a rare disease may choose to exercise extreme caution and self-quarantine to stay away from others who may have become exposed to the virus. Imagine how difficult this might be for someone who is already relatively isolated or for their caregiver, who must be mindful of their own exposure risk to avoid putting a patient at risk.
These measures will help slow the spread of COVID-19, but they can create additional mental health burdens for people living with a rare disease. For example, we already know that a link exists between social disconnectedness, perceived isolation, and mental issues (including depression and anxiety) 1, 2, 3, 4. Living with a rare disease can complicate the mental health surrounding self-quarantine and self-isolation.
Again, specifically asking about this may be unwelcome, but being mindful of it may give you ideas of how to help in other ways. For example, schedule a virtual videoconference “hangout” and talk about a television series, movie, or book, or play a game. Now more than ever, people are coming up with creative ways to engage digitally during self-isolation.
How to Ask If You Can Help
You of course wouldn’t be reading this if you didn’t want to help. You most certainly can help! If you’re able to help your friend or neighbor who lives with a rare disease, offer how you can help. For example, “I can get groceries and household goods for you and drop them off on your doorstep,” “I can drive you to your medical appointment,” or “I am ordering a puzzle and board games online for home delivery, would you like me to order something for you?”
Clearly stating how you can help gives the recipient options to select from, which may make them feel more comfortable accepting your offer.
Trust the Person Living with a Rare Disease
This is our last piece of guidance. People living with a rare disease may already have a network they rely on. When you offer to help, you’re offering to step in and fill the holes in their network that COVID-19 has caused. Always trust them to tell you what they do and don’t need. Even doctors will say this: people living with a rare disease are their own experts. If your offer of help is turned down, don’t push for the person to accept your offer. You can simply say that you’re thinking of them and are here for them. Regular communication with people is an easy way to show you care. Sharing what is happening in your own life will continue to maintain a critical bridge of communication that we all benefit from.
We all need to do our part to stay safe and healthy. Whether we have a rare disease or not, we are sharing this experience that is the COVID-19 pandemic: We are all vulnerable to some degree, and we can all benefit from social interaction and a shared sense of community.