Fighting for Job Accommodations as Someone With an Invisible Disability

I am exhausted most of the time. Between work and medical appointments/routines I have two full-time jobs. I use one to pay for the other — when I can.

I’m in pain and have battle fatigue. I’m tired of always having to fight my body, using mind over matter to get through my days. I’m up late and wake up early, not because I want to, but because either my brain, my digestive system, or my bones won’t let me get to sleep or will wake me up and keep me up. But that’s not all.

Work is less than understanding and has been giving me push back for a while because of my illness-caused absences. I’m not sure if they think I am making this up, or they just don’t care, or both, but it has made being at work very stressful. Despite all of this, it took a fair amount of backlash from management and emails with HR for me to finally open up fully to my gastroenterologist’s patient coordinator about what was going on.

Why didn’t I speak up sooner?

I can give multiple reasons, however the truth of the matter is I thought I deserved the treatment I was getting from my job. And I thought if I spoke up about it to a medical professional, I would get backlash as well basically being told to tough it out — which has happened before on multiple occasions.

But now I had enough and I got mad. In an empty conference room, holding back my tears, I explained everything. How HR had requested multiple medical certifications for FMLA from my primary because they were not satisfied with what it said and my attendance at work, despite being told multiple times that all of it depends on if I am in a flare or not. How management was giving me the ring around with my 4/10 schedule because of a high turnaround in their department which they caused. That I don’t know that how much longer I can be at this job because of this lack of understanding from my management. How I haven’t been doing so well these last few months and part of it is my job, but another part of it is I am losing my will to fight for a sickness-free life and I may need to up the frequency of my infusion.

And her response shattered my fears…

“You should not be treated this way.”

She sent a message to my gastroenterologist explaining the situation, requested a note be written so I could keep my schedule and said I would have the note ASAP.

Then she changed my infusion scheduled to every four weeks instead of six.

And finally she told me to give her a call if I wasn’t doing better with the new infusion schedule. That I should not wait for months before talking to her. I should not suffer needlessly.

In short, she and my gastroenterologist came to my rescue. I was lying in the battlefield of my life with this illness and they gave me a note that explained everything about IBD, including citing the law about disabled persons and why it’s necessary for me to have a 4/10 schedule. She included her contact information if they had any questions, comments or concerns.

I sent the note to HR and am now working with them for accommodations. I sent it to management as a courtesy as well, so they would get off my back. And I saved it on my phone for those times when I think it is all in my head, I am just being a baby and I deserve to be treated poorly because of my illness. Because that’s not true, but sometimes I need to hear it from someone else besides me.

So, in case you are feeling that way today, please know…

It is not all in your head. You are fighting a chronic illness that is real, even if it is not physically visible, even if “you don’t look sick.” And you are doing the best you can to live your life to the fullest. Please don’t expect yourself to be able to do the same things a healthy person can.

You are not a baby. You are a strong, brave and courageous warrior. It takes grit to keep your hope alive and to be as functional as you are. You are not weak.

Finally, you deserve to be treated with the same respect as any other human. You deserve this no matter what your religion, skin color, heritage, sex, gender, size, age, physical or mental disability, visible or nonvisible, level of education or intelligence. Period. No clauses attached. No caveats or conditions.

And if anyone makes you feel otherwise, you owe it to yourself to no longer associate with them.

With chronic illness, especially IBD, our energy can be so very low, we have to choose our battles carefully. The battle to be treated fairly and not just the same as everyone else can be hard, especially when it comes to working full time. With that being said, it is a battle you can win, but more importantly, it’s a battle worth fighting.

You are worth that battle.