Image from Interstitial Cystitis Association
I’ve always been disabled, though I did not accept this title until relatively recently in my adulthood. I come from a chronic pain family and have had chronic pain since early childhood. It didn’t dawn on me until about junior high that not everyone felt the unrelenting, severe physical pain that I did – including migraines, back, muscle, joint and nerve pain. To me it was just normal, especially considering that many in my family are the same way.
I realized that I was different around the sixth grade, when it became clear that most kids didn’t carry around ibuprofen with them everywhere they went like I did. In the 7th grade I had to start wearing a back brace for scoliosis and kyphosis – painful conditions of the spine. At that point it was hard to ignore that I was not the same as my healthier peers. This is when I first remember starting to make efforts at concealing my disability. My siblings and I pulled out of public school to homeschool that year. I attended class a couple times a week during my homeschooling years, and would remove my brace for an hour or so at a time to attend class, then put it back on as soon as I got in the car. The majority of my peers never knew about my brace, with only my close friends being privy to the information.
My medical problems only got worse and more numerous as I got older. The migraines got extreme in college, ultimately culminating into a constant severe headache that was with me from the time I woke until I went to sleep everyday for months at a time with no signs of abating. During this time I double majored in chemistry and biology at a very challenging technical school. This is where the concealment really took off. I never told my professors I was sick. A few classmates knew, but I feared that my professors would think I was asking for special treatment, and that was the last thing I wanted. So I kept my considerable pain to myself, despite the fact that I could have taken advantage of resources at the school. Despite this challenge, I earned Magna Cum Laude with a technical double major in 4 years.
In grad school it got worse. By then I had developed interstitial cystitis, a cruelly painful autoimmune disease of the bladder. Again, I hid this as well as I could, this time for more obvious reasons. What woman wants to tell her male supervisor that her bladder is on fire, her entire urinary tract crawling with what can only be described as medieval torture pain? I certainly didn’t want to. So the concealment of this along with my other ongoing medical problems continued. Again, my close friends knew, but my professional community as a whole was kept in the dark as much as possible for the same reasons as in undergrad; I didn’t want to ask for special treatment. I wanted to be seen as normal.
If you’ve guessed that this is unsustainable, you’re right. A bladder flare would hit me, and I would have to leave work unexpectedly to spend the rest of my day running back and forth to the toilet. I would come in to work late after being up all night in pain. Maybe things would have gone better if I had advertised myself as what I really was – disabled – and received the reasonable accommodations that I needed and was entitled to. All I really needed was some leniency when medical disaster occasionally struck. An hour off early here and there. What I’ve learned from that experience is this: if you don’t ask for accommodation, you will never receive it. People don’t understand what they have not been exposed to. And even if you tell them, they forget and need to be reminded periodically. Certainly in the case of invisible illness your problems are out of sight, out of mind as far as your managers are concerned.
My experience in traditional workplaces taught me one thing – if I am to succeed in the world as a professional, I must embrace and be honest about who I am. Sometimes I need to take a break, Sometimes I need to go home an hour early. And that needs to be ok. I left one career and decided to pursue entrepreneurship. Today I am a startup CEO. I work hard and I rest hard. I’m on the clock more than 8 hours a day working, but I make time to take care of myself when I need to. To take a nap, to take a bath, to take a moment to relieve my pain. In the end, all I needed was the flexibility to take care of my own body.
In my startup I manage my own schedule. If I need to take a pill and lay down for an hour in the middle of the day, I do. If I need to schedule meetings around doctor’s appointments, I can. I don’t have a boss wondering where I am. I can work from home in my pajamas with a hot pad between my legs on a bad bladder day. I can go to the gym in the middle of the day to relieve my muscle pain. This flexibility allows me to work many more than 40 hours a week while also taking care of my health. All it required was a few changes – a militant redesign of my life around my health, honesty with myself and others about my condition, and even a little forgiveness granted to myself when I need to ask for some extra help.
This is why I used to conceal my disability… and why I don’t anymore.
Read more here on why and how to tell your employer that you have a chronic condition such as interstital cystitis.