Working with a Disability


I was a worker. Over my lifetime, I worked several jobs at one time and put in a magnitude of hours. I missed family and friends events. I missed smelling the flowers. Over those years, I had inkling of my illness. Went to several doctors when it became difficult to manage, but I kept working. It may have slowed me down a bit, though, not enough. Then, after the birth of my second and last child, my body became a complete traitor. My sickness took a firm grip and would not let go. I figured it was God’s way of forcing me to relax.

I do not remember much of the first years of my son’s life. Most of the time I was asleep(though the word sleep makes it seem so voluntary). I could not stay awake and I was never rested. I did go to work in retail exactly one week after he was born. I stayed in retail until my body gave completely out on me. All the while that this was happening, we did not know what was causing it.
Yes, due to my history of depression, some doctors pointed in that direction. I know myself well enough to know when the depression is getting bad, and taking hold. It may take me awhile to deal with it, but I am aware it is there. My illness, I knew was not depression. Now, if only someone would listen.

I was very fortunate that my job was so understanding. Never once did they lay pressure on me, or guilt, for the times I missed or the times I had to leave. This is important, because I was not so fortunate a few years ago when I returned to the work force and my illness crept back in.

I’ve usually had odd things wrong with me. I had heart surgery at the age of two, and a murmur ever since. When I was about 19, I had major duodenal ulcers and dropped twenty pounds in ten days. They were uncertain as to where the ulcers came from and how they missed the seriousness of it. Right before my first son turned two, on Christmas Eve, I had a Ventricular Tachycardia episode. They avoided medication, due to my history, age, and my young son, and put in an ICD(implantable cardioverter-defibrillator). A couple of years ago, when they thought I could be having a heart attack, they discovered I had Sarcoidosis in my lungs. None of this gets me down.

A couple of years ago they discovered that I have an Autonomic Dysfunction. Basically, the things we take for granted, like getting up without passing out, breathing, etc., don’t work well with me. I like to say that my brain doesn’t play well with others within my body. No one cooperates. This illness has gotten me down on more than one occasion. However, it is rare that I have a cold or flu, so I consider myself fortunate! I also won’t die from this, so that is a positive.

My experience with the work place above was positive. I quit when I felt I was missing too much work, causing havoc on my coworkers schedules, etc.. I was fortunate that they were willing to take me back and I was told I needn’t worry.

A number of years go by before my health is once again manageable. I started being able to make plans I could stick with, which the illness doesn’t always allow. Times had been tough, but I felt I could go back to work to help make ends meet. My husband worked so hard during my illness, between his outside job and his job taking care of me and our two young boys. I wanted to help. In true “Britt” fashion, I chose a full time job instead of a part time, and went back to work. In hindsight, I should have started slow, but, then, that wouldn’t have been me!

The first year was great. I had a couple of health issues, and got a few “normal” illnesses, but I had a great manager, “Petter” (not her real name). She helped me get through the paperwork, etc., in order to keep me from being penalized due to my illness. It was during this time of working there that I became ill with Sarcoidosis.

Sarcoidosis is a granuloma illness that wreaks havoc on various organs. Mine was in my lungs. Once again, though, I was blessed that it did not leave any scarring. I do have swollen lymphnodes in my sternum, but that is it. Unfortunately, any illness causes the Autonomomic Disorder to go into overdrive with problems. My main problem being that I am unable to stay awake, or things that I normally do in a few minutes, takes ten times longer. Needless to say, this caused major issues in my workplace.

At first they placed me with work that wasn’t on a time table, and that worked great with me. Then, possibly higher up, they decided to put me back on a time table. Which would have been fine, but someone else was still doing the job I had been doing. Trying to make quota in the condition I was in was very stressful.

It is no surprise to me, now, knowing that stress also contributes to the severity of my illness, that my company cutting back, then being bought by another company, also contributed to how ill I was becoming.

My direct boss, Petter, was getting complaints from other workers about the times I was coming in, or leaving, etc. Though it wasn’t encouraged, I worked later and through lunches and normal breaks, just to try and keep up. I felt they were paying me for 8 hours and I needed to give them 8 hours of work. Unfortunately, my job wasn’t flexible in that respect. I still got to hear about the complaints from the coworkers.

Personally, I didn’t think it was something that should have been told to me. What your coworkers say or do not say, when not knowing a particular situation, should be kept at a discretion. This made it more difficult for me to want to show up at work. The depression began and I found myself crying at work.
I was a mere shell of myself. Now, I am finally strong enough that I could tell people a few things straight. First would be to pay attention to your own selves. I wish my manager would have done that. It would have made my time there much better.

Instead, assumptions were made. When I didn’t get to work on time, even by a minute, I would quickly sit down and start working. This made sense to me. My “new” manager took me aside and told me she felt I was being sneaky by doing this. Keep in mind, they could tell from my computer when I got there and when I left. I had be told that other employees were watching me. So, how was I being sneaky?

Then, another time I was late, but called because I was late due to my illness kicking in, I showed up with a latte. My replacement manager asked me what she was to think with me showing up late and with a latte. Well, I guess she could have asked or gave me the benefit of the doubt, since my husband bought it for me. He knew I was having a bad morning, and he ran out and picked one up for me. She decided I could not participate in work events because I could not keep up my numbers. Never mind, that I couldn’t keep up my numbers because my illness was slowing everything way down. I realize it was important to keep the numbers up, but I was not doing anything intentionally to keep them down. To me, I was being punished for being ill. I began taking unscheduled breaks again, because I had to give in to my bodies clock. I still gave the office 8 hours of me. Unfortunately, not on their schedule, and I did try to. When I took a break to send out an email regarding a fellow coworker and his new house, seeing if anyone wanted to get him a card and gift, she responded by telling me it wasn’t fair that everyone else was working hard when I wasn’t. Then, coincidence or not, her and her boss went over to the partial group of people that I sent the email to, and laughed and talked.

It has been four years since I finally up and left that place. This is a shame, since I did enjoy working for the new company, just not the “old” people. I couldn’t take leaving there in tears anymore. It was contributing to my worsening health and effecting my family life. I got to the point that I would come home, sleep and not wake until it was time to go to work. I rarely drove anymore. I could barely work. When I surpassed my allotted time off, when they could legally fire me, my “new” manager wasted no time in doing so.

There may or may not be a lawsuit in that mess. There were definite incidences of being provoked that I could refer to, simply due to my illness. Though I believe I am responsible for my own feelings, I do believe they tried to break me. I don’t think that was paranoia without reason. I do not believe people should be allowed to treat other’s the way I witnessed.

I am now on disability. We accepted it in order to make ends meet. Considering my mother refused to go on assistance when putting herself through school, as a single parent, this would not be my first choice. I still feel guilty. I would rather work, but after the last experience, I am a bit gun shy. Will my body cooperate? Will the company work with me? I am a good worker and I miss being able to contribute in that way. However, my kids need a mom. In that last situation, I wasn’t there for them. I allowed the job to take a great deal from me. I couldn’t allow that again.

It’s taken me this long in order to be able to write about my experiences. I’ve had bad dreams over it. Which, thinking it over, seems ridiculous, but I do. Always, it is certain managers who feel I am never doing enough, and rally my coworkers to support them. I wish those dreams would stop. I wish I could return to working. Most of all, I wish I would have never experienced what I did and I hope other’s won’t experience it either.

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