It can be scary when your loved one receives a diagnosis of a rare disease. While this can be a very stressful situation, there are several ways you can become their advocate and be there for them throughout their journey.
Listen to Your Friend and Check In Regularly
Understand that your friend may not be able to spend much time with you initially as they are processing this news. However, they will still want to connect with you when the time is right. Listen to their concerns and send them a text every now and then to say hi. While they may not feel up for company, they’ll appreciate the gesture and that you are thinking of them.
Educate Yourself About Your Friend’s Condition
It’s normal to be curious and ask your loved one questions about the disease. Rare diseases are rare because not very many people are diagnosed with them, and a lot is unknown about these conditions. However, be gentle when approaching your friend with questions and respect their privacy if they do not want to share all the details with you.
Bring Awareness Through Fundraising Events
If you’re looking for creative ways to raise awareness about the disease, consider setting up a fundraising campaign. For example, you could organize a walkathon and sell bracelets and custom t-shirts to get your message into the community. Not only will this show your friend how much you care, but you’ll also make others more aware of the disease and the symptoms to watch out for. Having custom shirts will make it that much more personal for your friend.
Become an Advocate for Your Friend
There are several ways to advocate for your friend as they learn how to manage their condition. For example, you could offer to help track their symptoms and how they feel. By keeping a record of this information, you can help their medical team adjust their course of treatment as necessary. Also, if you’re accompanying them to their appointments, remember that their doctors may be treating many patients every day. It’s okay to ask them to repeat information for clarification. This way, your friend can make an informed decision about treatment options.
Respect Your Friend’s Choices
While it is difficult to think about, there may come a time when your loved one is unable to communicate their wishes for further treatments. Many rare diseases are progressive without any known cure. Make sure to have these important conversations well ahead of time while they are still feeling good enough to do so. Knowing what their wishes and concerns are and writing them down can help reduce any conflict with other loved ones in the future.
Some people find it especially challenging to accept support, even when they need it the most. Don’t take it personally if your loved one refuses your help. Everyone can benefit from having a friend, no matter how strong they may be. Just letting them know you are there for emotional support whenever they need it is a powerful way to show them how much you care.