When Rare Disease Needs Don't Make Sense to Others
Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my experience, the social aspects of living with a rare chronic disease are (sometimes) the most difficult to manage. Many of the ways in which I need to conduct myself while living with a rare disease simply don't make sense to other people.
For example, I can explain to people that I have a rare disease called narcolepsy, and still, they will wonder why I am the way that I am, why I make the decisions I make, or why I do the things I do. It's a mystery to the external eye, especially if they are only viewing things from a shallow or non-empathetic perspective.
Sometimes I need to cancel plans
From an external point of view, I am flaky. I cancel social outings if I am having a bad symptom day. I can't just hop up at 4 PM to meet up with a friend if they call me needing help with something; 5 PM is when the sun sets and when I am too sleepy to drive safely.
Sometimes, I make plans and then have to cancel the day of because I simply can't force myself to get out of bed and stay awake. From the outside, I seem like a flaky friend. This point of view, though valid, completely disregards how many obstacles I have to hurdle just to do basic life tasks.
Setting boundaries for myself and others
Sure, I could completely disregard my own needs and cater to others. I've done it in the past: overconsuming caffeine, neglecting my prescribed daytime nap routine, or using my energy for the day to hang out with friends instead of walking my service dog.
However, this ends up with me becoming utterly depleted, unable to take care of myself, my service dog, or my own home. I suffer deeply. And then I resent the other person for my suffering.
To keep myself and the relationship healthy, I have to set boundaries for myself and others – even if what I really want to do is say YES to them. I have to be the parent and protect my inner child from hurting themselves and others in the long run. It is not sustainable for any of us if I am constantly and completely depleting myself for another person.
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Accommodations and invisible disabilities
From an outside point of view, rare disease accommodations can seem strange. It is hard enough as a person with a disability to be able to get accommodations – adding on the fact that my accommodations look very different from the average disabled person doesn't help things.
People are less likely to believe that I have an actual disability because of the strangeness of my requests, and more likely to disregard my needs. As a young adult with multiple invisible disabilities, I face these types of discrimination often. I've been told things such as, "You can't sleep here!" while I had a sleep attack in public. I've been denied entry to public places because of my service dog. I was told that I could come inside if I just tied my service dog up outside. (Um, no, thank you.)
Do you ever feel that your rare disease needs are misunderstood by others, too? Share more in the comment section below.
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