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.
We sat down with leadership at KeepTruckin, a Chronically Capable partner, to find out what makes their workplace inclusive for chronically ill and disabled employees.
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We spoke with Lucia Romano, a supervising attorney of the Employment Voting and Access Team (EVA), Client Assistance Program, and a team focused on employment at Disability Rights Texas. Lucia outlined helpful strategies for both chronically ill and disabled professionals as well as employers to make the workplace inviting and accessible.
Do I have to disclose my disability to my employer? What accommodations am I entitled to request? Can I be paid less because of my reasonable accommodation? So many questions might arise as you go through the employment process.
There are simply no excuses for not hiring chronically ill workers. Doing so would detrimentally reduce your available talent pool.
Let’s start by getting this straight: you do not have to disclose anything about your health to an employer. If you wish to disclose, you’re allowed to disclose at any point in time, whether that be during the interview, during the negotiation process, once you’ve started, or even three years into your job.
This year is the 30th anniversary of the monumental passage of the ADA and the 75th annual National Disability Employment Awareness Month (NDEAM). Prohibiting discrimination against people with disabilities in buildings, transit, schools, planes, and work enviornments, the ADA finally recognized people with disabilities as the valuable members of society that they are, following years of discrimination and opression prior.
Living with a chronic condition is incredibly time- consuming. Whether it’s frequent doctor appointments, blood draws, treatment schedules, or taking the time to rest, our days are jam-packed to the brim. I know this first hand as I’ve struggled with Lyme disease since 2015.