Disclosing Rare Disease Needs

When living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly?

Living with a rare disease usually means that other people aren't well-informed about my condition. Personally, I've noticed that I frequently have to do a lot of explaining to get my needs met.

Informing others about my rare disease

Sometimes, people listen, and sometimes, they don't. In some cases, people are determined not to listen to my needs or the reasons for them. This is usually a sign that something deeper is wrong with the relationship. However, I've noticed that there are a few actions I can take to increase the other person's receptivity.

How to share your needs with a rare disease

Here is a step-by-step guide I follow when disclosing my rare disease needs in various settings.

Step 1: Inform the other person in advance

Surprises can be fun. But when it comes to accommodating medical needs, surprises are less fun.

Before I attend events with a new person, I like to disclose my rare disease and the accommodations I will need. This ensures that the other person knows what to expect.

When I prepare the other person in this way, it reduces the chance that they will be disappointed in the long run. Living with the rare disease that is type 1 narcolepsy means that I have considerable limitations compared to the average person. It means that an 8-hour event will most likely be whittled down to a 2-hour event to prevent public sleep attacks. So I like to give the other person a heads-up about this out of consideration.

Step 2: Be direct

It can be tempting to dance around the topic or speak more broadly. Why? Because it can be uncomfortable to talk about these things! But in the long run, being direct about your rare disease needs is more effective and efficient.

Instead of beating around the bush, being direct about my needs means people are more likely to meet them. If I don't advocate for myself, no one will!

Being direct about my needs can help the other person understand exactly how to support me.

Step 3: Practice active listening

Communication consists of listening and speaking. Active listening is a specific communication method in which a person seeks to improve mutual understanding.

You can practice active listening by paraphrasing what you hear back to the other person. Other aspects of active listening include nodding, smiling, and empathizing with the other person. Asking questions is another way to showcase active listening.

When you listen actively, you show the other person that you care about what they are saying and feeling. It's important to both display and watch for signs of active listening during any form of communication.

Your rare disease needs are valid

If you feel that the other person is not participating in active listening while you are sharing your rare disease needs, there may not be much you can do to change that. But this is not a reflection on you or your worthiness. It's important to remember that your needs are valid whether or not other people decide to listen.