MS and Time Off (or lack-there-of)

As I’ve talked about before, time off is alway a tricky problem when you have any chronic illness. If you are fortunate enough to have your symptoms under control and have a care regimen that allows you to work in a traditional setting, you may struggle a lot with this topic – I know I do. It is a source of constant stress and anxiety. I feel like nobody else my age thinks so much about the number of sick days and vacation days they have. 

As you may know, I am a novice in the work force and in the MS club. My symptoms began about a year ago, only 4 months after graduating from college. At this point, I had zero time off from my job. I was working for a pretty big nonprofit in Boston with the dreaded “probationary period”. This meant that I had no sick days or vacation days until I had worked there for six months. I was only 3 months into my job when the symptoms started. I missed about a week of work in October as I went to doctor’s appointments every day, slowly working my way to a diagnosis. Then I missed another week in January as I fought through my first “episode” since the original one. This time it was brought on by a massive fever, so it was a long recovery. The steroids took me out for another day, since the withdrawal made me feel like a 90 year old with skin way too fragile to go on public transportation to the office. When you added it all up, I had used all my sick and vacation time before December, when I finished my probationary period. So my manager and I had to work through it. I worked from home a LOT, which I was lucky to be able to do. I worked extra hours when I could, and I felt extreme work guilt, to the point of crying constantly about missing work. My direct co-worker, the girl who had the exact same job description and was hired at the same time, never missed a day. In fact, she took her first day off recently and texted me to tell me about it. Work guilt is a bitch. 

When I left that job to move closer to my family and my doctors, it was time to start a new job and go through another probationary period. This one was three months for sick time and six months for vacation time. Regardless, I was forever stressed during those three months. Every tingle stressed me out. Luckily, I made it through without missing a day. Wait…no…I missed one day but it was planned! The first week of my new job I missed a whole day for my Ocrevus infusion…we can’t be perfect! 

I think that time off will always be a stressful issue in my life. I am always trying to prove myself and advance in my career. I want to be the perfect employee, but I have MS. I have many friends who take days off when they’re feeling a little off, or take the whole day when they have a quick doctor’s appointment. I feel like I can’t do that, I can’t waste what time I have. But this past year has taught me how important health, mental and physical, are to being “successful” in life. I will always put my health first when it comes down to it, but I will probably cry with work guilt the entire time. 

Starting a New Job….with MS…

Starting a new job is never easy. You never know what to expect no matter how thorough the interview was or if you know someone who works there. Maybe you will hate your boss or find out that the only microwave for 500 people barely heats up your lunch. I’m not talking from personal experience or anything… 

Consider all of the normal new job anxieties and then add a big old dose of “I have MS”. Do you tell your boss? Your coworkers? What about the fact that it will be six months until you have ANY time off? What if you have an episode before then? What about the MRI you have scheduled next month and your many doctors appointments? It’s scary and it is not something that many of the people in your life can relate to. They will try to calm you down and talk about their experiences, but it won’t be the same because you have MS. But you already know that. 

I started a new job recently. I was so nervous that I was too nauseous to do anything the Sunday before my first day and ended up throwing up that night. I cried on the bathroom floor convinced that I would be too sick to go to my first day of work, which would really set the wrong tone for this new job. I still felt sick that entire morning, I forced myself to work, told my boss that “I recently had a procedure and the medication was making me feel a bit off” (lie), and I ended up ok. In fact, once I got comfortable, I didn’t feel nauseous at all. Coincidence? Nope. I was so anxious that I made myself sick. 

I was anxious about all of the normal things, but also anxious that I was about 6 months into being diagnosed with MS and starting a new job. At my last job, I had told my boss about my diagnosis so she knew what I was up against. She understood when I had to take days off and go to appointments. My current boss doesn’t know and isn’t really the type of boss I feel open with, so I hope she will never have to know. This adds a whole layer of pressure. At one point, a few weeks in, I told her I had a chronic illness and may have more doctor appointments than the average 23 year old. She was understanding and I decided that was good enough for me. 

I counted down until I passed the 90-day “probationary” period. After that, I could use sick time if I needed it. Those first three months were constant stress. With MS, I’ve found that every weird sensation or pain behind my eye makes me anxious. “Is it happening again? Am I going to miss work this time? Wow, I hate those steroids.” But those first three months were even worse. I really wanted to show how dedicated I was, I didn’t want to be the new girl who kept taking days off before she was even allowed to. I don’t think anybody would want that. 

I got lucky. I made it through those three months. I still don’t feel in the clear though. I probably won’t for a while. My last job I missed so much time in my first six months. I ran out of sick time. Ran out of vacation time. I had to work with my manager constantly to make it all work. I felt like a failure honestly. My coworkers never took a day off and here I was barely ever in the office. 

I think a big struggle of being young and newly diagnosed with MS is comparing yourself to others. When you are just starting a career, relationships, maybe even a family, a life, it is so difficult to add a chronic illness to the mix. It is so hard not to compare yourself to the other people your age. I have friends going out to the bar every night, traveling Europe on their own, working 70 hour weeks, moving half-way across the world from everyone and everything they know. Of course, I could do these things too. I could do them until I felt like I couldn’t anymore. There would probably be a time when I would get too tired or just too anxious. And when you are young, that is hard to think about. It takes away a lot of the impulsiveness that you are supposed to have as a twenty-something.

The conclusion is that starting a new job is always hard. It is even harder when you have MS. With time-off always being an issue and then comparing yourself to colleagues, it can be extremely stressful, and it is easy to feel like a failure. I’ve found that being as honest as you are willing to be with your managers and giving your all when you are able will show your dedication to your job and your career. Remember that you don’t have it as easy as some of the people you know, but that just makes you even stronger and better at what you do. 

Has anyone else had experiences starting a new job with MS? Or are you about to start a new job? Share in the comments!