5 ways to support a loved one with a rare disease

5 ways to support a loved one with a rare disease

Today is Rare Disease Day, which was created to raise awareness for rare diseases and the people who live with them. I was diagnosed with Congenital Muscular Dystrophy when I was a baby, which is a rare neuromuscular disease. If you want to learn more about CMD, I’ve got a bunch of posts about what it is and what it’s like to live with it. But for today, I wanted to talk about supporting people with rare diseases.

When someone you love is diagnosed with something you’ve never heard of, you might not know how to help them. And that’s okay! I know that a lot of people see my wheelchair and automatically assume they know what I need or want because their grandma or cousin or neighbor is in a wheelchair, too. The intention is great, but sometimes that’s not enough. Being disabled or sick isn’t always easy, and something important to remember is that it can draw a ton of unwanted attention. I know I’m not the only person who’s been hurt, put in uncomfortable situations, scared, etc all because someone tried their best to help me without really knowing how.

So, while everyone and every diagnosis is different, here are 5 easy ways to support people with rare diseases!

5 ways to support a loved one with a rare disease
[IMG: photo of Karly in her wheelchair, arms at her side, and smiling. She’s wearing jeans, a blue tshirt, and has a small black bag resting on her leg.]

1. Listen to them

The problem with so much of the conversation surrounding rare diseases and disabilities is that the prominent voice is usually that of a parent, doctor, or a caregiver. The voices of actual disabled and chronically ill people end up pushed to the side. And that’s a huge problem, because any information or awareness should come from the community, not those who happen to be adjacent to it.

If you’re going to help them, you’re going to need to listen to them first. Listen when they tell you what problems they’re facing, when they talk about their community or the problems with our health care system. Instead of making assumptions, ask them what they need. How to help. How they’re feeling.

2. Believe them

I know that sometimes symptoms might seem hard to underestimate. And sometimes it really sucks when a friend has to keep bailing on plans. But trust me when I say that one of the most helpful things you could ever do for a loved one with a rare disease is to just believe them. Hold off on any of the questions you want to ask to get them to prove themselves. Listening is important, but believing them is even more so.

Speaking from experience, it gets real tiring having to “prove” yourself to doctors, teachers, social workers, random strangers, people on dating apps. And no matter how much that sucks, it stings 1000 times more when it’s coming from someone you love.

3. Don’t give medical advice that no one asked for

Wanting to offer advice to help someone is super understandable. Especially when there’s not much else you can do. But when you have a rare disease, you’ve been to the doctors. A lot. Like, a lot a lot. And if you haven’t, you’ve already spent hours and hours on the internet googling your symptoms and trying every home remedy you can.

People don’t typically sit around in pain or sick for weeks or even years on end without trying everything they can to feel better. So chances are, whatever you’re about to suggest has already been tried before or ruled out. If your loved one asks for advice, fire away! Offer up anything you’ve got. But if they haven’t, just be there for them and trust that they’ve got their health under control.

4. Make an effort to be accessible

So much of the world is inaccessible for disabled and chronically ill people. Shops, clubs, parks, the houses and apartment complexes where all your friends and family live. Sometimes your loved one might need you to help them carry things, or turn on the captions, to switch venues, or to put up a ramp. I’ve been disabled since I was born, so I’m pretty used to asking for things. But being used to something and enjoying it are two different things.

When someone goes out of the way to make things accessible for me, even in the smallest of ways like moving a chair without me asking, it’s a huge comfort. Acknowledging that things can be a little hard and then going out of your way to make it a little easier is one of the biggest ways you can support someone with a rare disease.

It doesn’t have to be some huge grand gesture. You could literally just be the first to bring it up sometimes. Next time you have plans, shoot them a text and say “hey, is there anything I can do to make our day more accessible for you?”. You don’t have to have all the answers, but it helps to show that it’s something you think about.

5. Get involved

It’s not your disabled friends job to educate you. It can be exhausting, sometimes even traumatic for some, to have to constantly delve into the details of your life and medical history. There are a ton of incredible activists who dedicate their life to spreading awareness about living with a rare disease, though. If you want to know more, give your loved one a break and start googling!

Research their disease on your own, but don’t stop there. Read up on the issues that the community is talking about. Learn why straw bans are ableist and how to be environmentally friendly without threatening disabled lives. Read up on bills that threaten Medicaid/Medicare and how cuts to healthcare kill people. Educate yourself on racism in healthcare or how poverty is so prominent within the disabled community.

Learn from activists, and then take that knowledge and do something. Get involved. Vote against politicians and laws that threaten the livelihoods of people with diseases (rare or not). Amplify our voices. Protest with us. Spread awareness. Fight with us. Activism around the disabled community tends to feel like an echo chamber. We’re constantly shouting and no one but us is listening. If you want to help a loved one with a rare disease, they need you to start shouting along with them.



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