A Letter From Your Colleague
Thursday, October 25 at 8:34 p.m.
“I’m coughing up blood so I have two friends coming now to check on me. Most likely going to the hospital tonight. My mom told me to let someone know and I don’t want to make it a ‘thing’ I’m fine.”
Friday, October 26 at 9:10 a.m.
“Hey guys! just wanted to let you know that i’m going to be home today, working pretty sparsely. I had an episode last night and fainted multiple times. Didn’t get home from the ER till very very late. I’m OK and stable, just need to rest and stay laying down. Sorry for the inconvenience.”
These were the messages you sent just before learning you had relapsed with Lyme Disease and had to spend a week in the hospital. When you returned the next Thursday, I watched you take a quick breath, straighten your back, and ask the team permission to bring your IV into the office so you could administer life-saving treatment through your picc line.
I felt so, so sorry for you. But not because you relapsed; despite only being 22, you’re one of the strongest women I know, and I know you will beat this disease. I felt sorry that our society has created a culture in which you feel your illness makes you an inconvenience, like taking care of yourself is somehow a burden to those around you. I want you to know that it is NOT.
I often wonder if my awkward silences, or diverted gazes have contributed to this. Perhaps you saw this as something taboo to talk about in the office as these were the reactions you often got. But I want you to know that the discussion doesn’t make me uncomfortable. On the contrary, I would absolutely love to learn how I can better support you. I simply don’t know what’s appropriate to ask, or how to ask it, so I end up avoiding the conversation altogether.
I want you to know that I’ve never seen you as “the girl with Lyme Disease.” That is not what defines you. I see you as Hannah, one of the most hilarious, clever, and business savvy women I know. Your work is not judged as “good for a sick girl,” it is judged on the same plane as absolutely everyone else.
My greatest hope for you and Chronically Capable, is that no one with a chronic illness ever feels like they have to apologize for their condition, or believe it defines them, and that dialogue about chronic illness in the workplace can become normalized.
NDEAM celebrates both the past and present contributions of workers with disabilities in America. Importantly, NDEAM serves as a mechanism through which supportive and inclusive employment practices and policies for all workers, especially those who have a disability(s) can be showcased, advocated for, and encouraged.
Growing up with an invisible disability has taught me that there are some people who are ignorant, unaware they are exhibiting audist behaviors. It’s because the hearing person has never met a deaf person before and will try to walk away because they don’t know how to interact with them. People who don’t feel comfortable have a tendency to get away from something so they don’t have to deal with it. That can be frustrating for deaf people.
Empathy is something that I believe is truly lacking in today’s society. “It’s gotten harder to empathize; that’s why it’s so important we work at it. Luckily, we can.” says Jamil Zaki in this UC Berkley article, 'In a Divided World, We Need to Choose Empathy'. The article discusses the hard truths surrounding empathy, supported by real-life examples and proven facts about how it can help us all.
I will never forget November 19th, 2019. My new rheumatologist broke the news this way: “I bet you have been told your entire life that your weight was the cause of your back pain. I want you to know it wasn’t, although weight loss can certainly help. We see the damage, and you were right - you have Ankylosing Spondylitis.”
As the weather heats up and we feel the urge to travel, I want to share some tips that have helped me keep my anxiety at bay while away from home. Many mental health illnesses flare up when we are away from home because we are naturally out of our comfort zone.
Existing as a disabled woman in the workplace, we face any number of barriers to getting our jobs done but none more painful and avoidable than the ignorance of our peers.
I knew I was an actor before I knew I was Autistic. I started acting at 11 years old, but I wasn’t diagnosed until I was 22.
There are many misconceptions about the lives of those of us who live with CP. I hope to help someone who may be living, loving, or just learning about Cerebral Palsy.
While many of us know the benefits of closed captions, many Zoom users still have not enabled closed captions. While this used to only be offer to 'paid' Zoom accounts, the company announced earlier this year that closed captions would be available to all Zoom users, regardless of plan type.