9 Ways to Support Your Friend with a Rare Disease
If your friend has a rare disease, please keep in mind that it was not an easy route for them to receive a diagnosis, and for some individuals, they never do.
“Rare” means that many doctors may not have been familiar with their disease or symptoms. Along the road to diagnosis (and likely ongoing), patients with rare diseases likely were faced with discrimination and it took themselves, a caregiver, and/or another doctor to fight for that diagnosis. The search may have taken many years and multiple providers and institutions. They likely ran into medical experts who questioned their symptoms and/or judgment, or simply did not want to care for them because they were seen as “too complicated” or a liability. This can be a shameful and an often traumatic process.
You may not know how to help your friend, and it may seem like a daunting task when you can’t relate to their experience, however, there are many ways that you can support your friend in a way that is productive and useful:
1. Start by asking them questions. When everyone's needs and resources vary, the best thing you can do is ask your friend how they feel you can be useful.
2. Trust their knowledge. It's very understandable wanting to Google ways in which you can support your friend. You may want to look up a new treatment or find an expert who may be able to help. Although well intended, questioning your friend's medical care or decisions can actually be retraumatizing. Often rare disease patients become the experts, so trust your friend to make good decisions. It takes a level of strength and tenacity and a certain skill set to navigate our very complicated medical system, which you may not fully comprehend.
3. Show admiration for your friend's ability to manage their illness. Managing a rare disease while maintaining their lives is akin to a full-time job. It requires ongoing medication management and case management to schedule appointments all while dealing with our very frustrating insurance bureaucracy.
4. Support and credit your friend in their decisions. Your support and appreciation will help validate their fight. Half the battle with a rare disease is not the disease itself but fighting to obtain adequate treatment and understanding.
5. Learn about your friend’s disease and advocate on their behalf. Attend a local walk for a rare disease foundation, organize an online donation for a local foundation, in honor of your friend, send a Facebook post with your friend's story, etc. Advocating on their behalf is a way that you can feel useful.
6. Lend a hand. Life is busy for everyone, but managing a rare disease makes it even busier. Ask what you can do to help to lift the burden from any of the many responsibilities they have. For instance, offer to pick up their children/pets, or ask to attend a medical appointment, procedure, or pickup.
7. Let your friend talk – give them the opportunity to vent or be distracted. All the time, money, and effort rare disease patients spend managing their medical needs does not leave a lot of free time for them to talk to the people in their lives. When they do, sometimes they may want to vent, and sometimes they may want to be distracted. Patients can feel, isolated, lonely and disconnected. Although texts, emails, and social media can be useful communication mediums, there is no substitute for the real thing! Spend time with them. Your companionship and time are likely the best medicine you can offer.
8. Bring the party home. Offer to bring over a meal or to watch a movie at their home. Because of transportation time or physical limitations, it may be more challenging for your friend living with a rare disease to get out. Also, recognize that your friend's level of functioning can change over time. They may not be able to do some of the things they used to, and this can change from day to day or week to week! Check-in with your friend about what they may be up for that day. Your friend may feel torn between craving the social time, yet not wanting to feel judged when they do have to cancel. This is a very difficult balance for all patients who live with chronic health care conditions. Find new ways to spend time with your friend and make them feel that your friendship is what is most important.
9. Be there. Ultimately, the best way you can support your friend or loved one is to show up and let them know that “rare” does not mean going at this alone!