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

Learning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey.

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

Educate loved ones with reputable resources

When first explaining my conditions, some loved ones 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 online articles from reputable organizations. I sent these to loved ones to help explain my condition. I think that when people are not open to listening during a conversation, a letter with links to resources offers another way to understand. Some people learn better through reading. Letters and articles are something they can read, reflect on, and return to later.

Stop apologizing for your health needs

This is one that I had to learn early on. I found myself constantly apologizing when asking for accommodations. 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 normalizes these conversations. Hopefully, others will then take me and my requests more seriously.

Set boundaries in conversations and activities

Redirect unwanted questions

I set boundaries in many ways. For example, I don't want every conversation to revolve around my medical conditions. Sometimes acquaintances don't quite know what to say. They might ask about my surgery as casually as they ask 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?"

Prioritize inclusive social gatherings

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. However, I found it puzzling when friends suggested restaurants where two to three of us could not safely eat.

When I gently pointed this out and asked if we could go somewhere else, 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. My answer would differ if this were 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. I would rather spend my time with friends who choose to be inclusive.

Find support within the community

Connecting with others in the rare disease or chronic illness community can 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 already share a deep understanding. I find it very comforting.

Prioritize self-care and peaceful moments

Living with a rare disease and advocating for yourself can feel like a full-time job. It's important to cut myself some slack, do nice things for myself, and focus on activities that I enjoy. 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.