8 Things People Living with Rare Disease Wish You Understood

8 things people living with rare disease wish you understood:

1. We want you to keep inviting us to things! It may seem like we must cancel plans often, but we still want to be included in them. We cannot predict when our “good” and our “bad” days are, so it’s difficult to commit to plans. We are sad and disappointed when we must stay home from social events because of our health. We also know it can be frustrating for you. Please bear with us and know we are doing our absolute best to attend. Including us helps us combat the feelings of isolation and loneliness we can feel.

2. A little empathy and support go a long way. People tend to stop asking us how we’re feeling because they’re used to us “always being sick”. We don’t like to complain or draw attention to ourselves. Remembering to check in during a flare up or simply ask if there’s anything you can do makes our day. We are also happy to be thought of when you ask about a doctor’s appointment or treatment/test/procedure.

3. We are trying our hardest to balance our lives and our health. It can feel like a full-time job to try to balance doctor’s appointments, medications, tests, and procedures. Everyday tasks you’re accustomed to and take for granted are things that can sometimes be impossible for us. Sometimes, just vacuuming the rug can drain us of all our energy reserves for the day. It may not seem like we are doing much, but we are giving what we do everything we have.

4. We want to work! A lot of us are on disability or fighting to get on disability because our disease/illness has prohibited us from working. Many of us went to college or beyond (and have the loans to prove it) to get a job in an industry we are passionate about. Over time, many of us are forced out of jobs we love as our health declines. We are not lazy, nor do we enjoy watching everyone else work full time jobs when we can no longer work ourselves. We would easily trade our illness for the ability to work productively if given the option.

5. We like it when you get to know our disease. We are not defined by our disease/illness, but it is still a large part of our identity. We are thrilled when you spend a little time Googling it and love answering your questions when you have them. Rare diseases are especially misunderstood and most have never heard of them. When you take the time to educate yourself it brings you closer to understanding what living with our rare disease/illness is like.

6. We like to do the same things you do for fun. We may be limited by our health, may have to adjust how we do them, leave early, and may have to just watch from the sidelines. Ultimately, we enjoy all the same activities you do and if we can make modifications, we are happy to join you.

7. We don’t like asking for help. Part of living with chronic illness means that you learn your limitations and learn to ask for help when you need it. That doesn’t mean we want to ask or that we feel comfortable asking for things. It is humbling to admit we need assistance, and we would love it if you made it easier by offering when you see us struggling.

8. We want to be seen as your equals. We are still your equals even if we may need to ask for help, cancel plans often, or are unable to work. We know that it can be difficult to remember, but without our illness we are just like you. We are not just a label or a set of symptoms. Above all else, we are your peers, your family, your partners, and your friends. The Rare community is all around you and we want to feel like we belong just like you do.