Disclosure is a huge issue for individuals living with episodic disabilities. Who do you tell? What do you tell? When do you tell it? I face that same thing. While I wasn't working at the MS Society when I was first diagnosed, I felt those same things. Even in job interviews, further along, what do you say? Do you disclose? I'm a fairly authentic person, and I felt the need to be honest and authentic, but at what risk? It's a huge issue for people, and I don't believe our system is well set up to support people early on in their diagnosis of episodic disability. I think vocational rehabilitation is a very important piece of the solution.
I've been able to, with the support of a very.... I work at the MS Society. It's a really good deal for me. They understand, though, that I do require accommodations—a flexible working schedule, being able to work from home, flexible hours. These are some of the job accommodations that help people with episodic disabilities to remain working, and that's a big thing.
The other thing, and I mentioned it, is access to medications, affordable treatments. I've been able to successfully use disease modifying therapies to alter the course of my disease. Those are things that have helped me be able to remain in the workplace, which is really important for people to be able to do.