Work and School

At work, we had cubicles. So, there's no door. And unfortunately, my coworker has a really loud voice. And they would talk from one end of the office to the other. And I kept telling them, because I told them I have MS, it interferes with me being able to concentrate on work. If there's loud noises, I just can't focus. And so, I kept telling her that, and she wasn't very sensitive. She just said, “Well, that's who I am, and I talk loud.” So, I was noticing the stress was-- I was starting to get more fatigue.  I was starting to, like, just not have patience. And I couldn't hear. I mean, I could hear everything, and it just interfered, where I couldn't think. And there were moments at work where I had what we call cog fog, where it didn't hurt to think, but it took so much energy, that I just didn't want to bother thinking. It was horrible to say that, but-- and so, throughout the day to remove the stress for work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus 

I suffer from incontinence. And there have been occasions when I've had to say to people, "Hey, you know, I'm more than happy to participate in the meeting, but you're going to have to allow me to take breaks so I can visit the restroom." I also, towards the end of my career at work-- as I said, I was suffering from fatigue. There were occasions on my lunch hour when I actually told my boss, "I'm really sorry about this, but I'm going to have to just lay down for a half an hour underneath my desk." I was that tired.  But it's a situation where when they hired me, you know, I was-- I'd been in the [LOCATION]-- I'd been working in a capacity where they already knew me, and they knew my condition. So, they sort of knew what they were getting. So, I don't think that I was-- I certainly don't think that the requests that I was making were all that unreasonable.

I did because I felt I had to. It had to do with ethic, work, and responsibility. I needed to say I can't work. My doctor told me I can't work. And I need to tell you why. And I went to the people I work with who I trust. And even that was weird because I was not thinking that they were going to be mad at me, or they were not going to like the news. It was the admission, to me, of all those times I had said I was doing fine, and I wasn't. That was very difficult. Very, very difficult.  

And once I did it, I was not happy I did it. I only say that because that weight around me didn't lift as a thing of relief or peace because I was still profoundly depressed. I don't think anything I could have said or done at that time would have make it better. But it did help me. I didn't look at it at the time, but they did help me greatly. And one of the things they helped navigate was who else needs to know and what do they need to know about me being outside. And those questions were not clear to me at the time. They are clear to me today. My answer is no one is entitled to that type of information in the work context, no one except your employer at the time. And just they need to know very little, but enough. That could be different for every single individual but, to me, something I never thought about before was something very difficult to execute.

Given the kind of places that I worked, I don't think I was comfortable, nor did I feel any need to tell them. That was the big thing. If something serious had happened where I couldn't get around as I did, I might have told them, but I probably wouldn't. But since I could get around, there was no need to. And I didn't want to be different. I guess that bit. I didn't want to be seen differently and that sort of thing.

But yeah, I'm very open about it. I know my employer, they're like-- when they found out about it, they were like, “How can we help you? How can we help you manage your disease while you're working for us?” But there's really-- at least, I don't know of anything they could do differently. They're flexible. I know most people don't work on Saturdays, but there was one Saturday I had to go to the ER because my symptoms flared up, and I was like, “Hey, I know I had this meeting scheduled today but I'm in the hospital. Let's reschedule.” And I'm 100% certain that some people would get mad if that happened. And my bosses were both like, “What can we do? How can we help you? Do you need a ride? Do you need a place to stay?” Because we thought-- well, I thought I had COVID. And they were like, “Do you have somewhere to stay?” So, it really hasn't been-- professionally, it hasn't been an issue.

I might have got a part-time job that did something other than what I’ve done all my life in the job that I had, but because I can’t do anything physical, that limits what I would be able to do. I got a part-time job just to have a little something to do when I retired, keep my mind fresh, see some people, have a few, you know, make a few bucks. But I might have done something different that way. Or another thing is like volunteering. I think that perhaps I would volunteer in a different way. I don’t do much volunteering now. For a long time, I was a big sister in a Big Brother Big Sister program. I’m still in contact with my little sister, who’s 20 now. But I, you know, I can’t do a volunteer thing like that now, I don’t think, because I’m limited physically.

But after some months I realized I can't do this. I just kept getting sick. And I kept feeling worse. And it felt like more symptoms would pop up after I thought I got one or another thing under control. And it's really just that the way MS in my body works is that working 40 hours a week isn't possible. It starts to make me worse. And quality of life is important. And now my job is to be a full-time mom and not be sick all the time.

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INTERVIEWER: How was that, making the decision to stop working?  

So, oh, maybe the hardest thing I've had to do. Which probably sounds silly, because I know a lot of people are like, “Oh, you don't work, must be great. I wish I had that life.” But I graduated from UT from a specific special sequence. And at the time it was one of the best advertising programs in the country. And you get every semester, they chop off half the class and they're gone. And so, to get through that was really big. And I loved, loved what I did, and the people in it. [CRYING] So I couldn't imagine just leaving that life.  And then I didn't know anything about disability pay. So, I was just like, what are you supposed to do if you stop working. And for a while I thought I could just do part-time.  But the unpredict ableness of my body doesn't jive with the way America likes working to beat you. You can't take a month-long sabbatical to get your body back on track or anything like that. And just pushing through was-- pushing through it was going to come at a greater cost than just stepping back and trying to create a new normal. So, it's very hard. 

So, I was working at the hospital. And like I said, I was on my feet all day long. And it was getting to the point where it was just becoming a little more difficult with some of the tasks that I had to do for work, because my hands would go numb. And it was difficult sometimes trying to put even the gloves on my hands.  So, I decided. At the end of the year, I turned in my resignation. And the woman in HR kept telling me, “Oh, you should just go on short-term disability.” And she kept kind of pushing it at me.  And finally, what happened was, because we had to pull call one weekend a month for the type of work that I was doing in the hospital. And the woman was making up this call schedule for December. And I looked at my schedule. And I thought, we've got something going every weekend. I don't have time to pull call. So that's when I decided, all right, I'm going to start short-term disability.  Because HR told me, in order for me to get long-term disability, I'd have to apply for short term. So, I applied for short term and started short term and basically retired the first part of December.