How to Advocate for Yourself in Social Situations With a Rare Disease

Learning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations.

Here are a few examples of how I have learned to advocate for myself over the years:

Create a list of scientific resources

When first explaining my conditions, I certainly had several loved ones in my life who just didn't get it. I remember my (now ex) boyfriend saying, "You're making a mountain out of a molehill," when I was diagnosed with a severe and life-altering autoimmune condition.

I started collecting a list of online articles from reputable organizations that I could send to loved ones to help explain different components of my condition. I think that when people are not open to receiving information during a conversation, a letter with links to resources can provide an alternative route to understanding. Some people learn better through reading or getting an outside perspective, and letters and articles are something they can read, reflect on, and return to later.

Stop apologizing and normalize expressing your needs

This is one that I had to learn early on. I found myself constantly apologizing in situations that involved accommodations for my medical conditions; I didn't want to be labeled difficult in other people's minds.

Then, one of my friends helped teach me this lesson. She told me, "Jessica, STOP apologizing. This is your health. It's not optional. It's something you NEED."

And I haven't apologized since.

I believe that firmly and clearly expressing my needs without apologizing helps to normalize these types of conversations, and I hope that as a result, others take me and my requests more seriously.

Set boundaries

Redirect conversation

There are many ways in which I personally set boundaries. For example, I don't want every conversation to revolve around my medical conditions. When an acquaintance doesn't quite know what to say in a casual conversation but remembers that I've been going through medical treatment, they'll ask about how my surgery was with all of the casualness of asking about the weather. I often respond and politely change the subject: "I'd rather not talk about that right now. Any plans for vacations this summer?"

Choose inclusivity

I have a disease that requires an extremely strict gluten-free diet, and many of my friends also have food restrictions. I'm fortunate to live in a city with many wonderful restaurants that can accommodate my needs. That's why I continuously found it puzzling when friends without dietary restrictions would suggest small group gatherings at restaurants where 2 to 3 people in the group could not safely eat.

When I gently pointed this out and asked if we could go to a restaurant across the street where everyone could eat, one person replied, "I want to go here. I guess Jessica will be drinking wine all night instead!" Well, Jessica and another friend from the group went to a different restaurant that night.

I never expect someone to bend over backwards for me, and certainly I would have a different answer if this was a much larger group, a special occasion, or a pre-planned event. But in a city with so many options, it's simply not cool to tell someone they have to sit and watch everyone else eat. In situations like this, I would rather spend my time with friends who choose to be inclusive.

Find support within the community

Connecting with others in your specific community or in the broader rare disease/chronic illness community can help provide much-needed support.

Often, when I need to vent or just talk through a difficult situation, I reach out to one of my friends in the community. I don't have to labor over a long backstory because we have a deep understanding about something very fundamental in each others' lives. I find it very comforting.

Take care of yourself

Living with a rare disease/chronic illness and advocating for oneself can feel like a full-time job, and I find that it's important to cut myself some slack, do nice things for myself, focus on activities that I enjoy, and find peaceful situations. I can't escape my autoimmune conditions, but I can seek out moments that do not require constant advocacy.

What tips do you have for advocating for yourself? Share with us in the comments below.