I am looking for advice about disclosure, both in general and in the workplace.
I was diagnosed over 5 years ago. I was on tecfidera for a year and Tysabri for 4 years (50th infusion is next month!!). I've been fortunate to have relatively mild symptoms. I have a permanently slightly numb leg, one side of my face is always a bit numb, and I get cold easily. I find myself limping and my leg gets more numb when I'm tired or have been walking for a while, but I can control my limp if I focus on walking "normally". Very few people in my life know about my diagnosis.
For a while now, I've been thinking that I'd like to make it generally known about my diagnosis. Not that I want to announce it publically or anything, but just let people know occasionally. I hadn't wanted to disclose at work, but I now feel more comfortable in my position and seniority. It's really hard for me to put it into words, but keeping my diagnosis secret makes me feel like a fraud. Instead of making some vague excuse about leaving work early for an appointment each month, it would be so much easier to be upfront about the fact that I am going to get my infusion.
I know there are downsides - once I disclose, I can't take it back. I do appreciate anyone's opinion about their experiences!
I was diagnosed over 5 years ago. I was on tecfidera for a year and Tysabri for 4 years (50th infusion is next month!!). I've been fortunate to have relatively mild symptoms. I have a permanently slightly numb leg, one side of my face is always a bit numb, and I get cold easily. I find myself limping and my leg gets more numb when I'm tired or have been walking for a while, but I can control my limp if I focus on walking "normally". Very few people in my life know about my diagnosis.
For a while now, I've been thinking that I'd like to make it generally known about my diagnosis. Not that I want to announce it publically or anything, but just let people know occasionally. I hadn't wanted to disclose at work, but I now feel more comfortable in my position and seniority. It's really hard for me to put it into words, but keeping my diagnosis secret makes me feel like a fraud. Instead of making some vague excuse about leaving work early for an appointment each month, it would be so much easier to be upfront about the fact that I am going to get my infusion.
I know there are downsides - once I disclose, I can't take it back. I do appreciate anyone's opinion about their experiences!
Comment