"As someone with MS, I often feel like I have to work harder than my peers just to prove I’m worthy of a job."
In 2018 I had my first MS relapse in over seven years. I had a suspicion that one was coming; I’d been working two very stressful jobs for several years, was volunteering for two organizations, and trying to maintain a somewhat productive personal life. Something had to give. I could feel the stress of my work and life catching up with me, so I proactively decided to cut way back on my responsibilities.
I started by resigning from one of my jobs — but, to be honest, the offloading process was almost more stressful than the job itself. I also stepped away from both of the organizations where I was volunteering, but I still didn’t feel like my stress level was improving. I’d kept one of my jobs — a job I really loved — but the demanding nature of the work was starting to weigh on me.
Then I relapsed, just like I had predicted I would.
I’d been living relatively symptom-free for seven years and forgot how devastating a relapse can be, and frankly, I’m grateful that I had the ability to forget that. Now that I’m in my thirties, a relapse was more than the emotional rollercoaster and halt on daily life it was when I was in my twenties. Now it was something that could actually threaten my livelihood.
That experience made me take a microscope to my entire life. Was the stress in my current life worth it? Was I gaining anything of major value by being so stressed out? When I realized the answer was a firm “no,” it was time for me to start looking at more than just the “extra” things I was doing in life. I had to look at the core of what I did and, honestly, who I was.
If your MS journey has lead you to a place where you’re starting to question your career, let it. Don’t be afraid to rethink all aspects of your career, or other work you are doing outside of your job, and how that may be affecting your MS.
I think it’s important to note here that not everyone has the ability to change jobs or drop to part-time work, and that there are very important decisions to make about providing for families and insurance. These are the questions I had to ask myself about how to navigate my career and my MS, but they may not apply to everyone.
Each person’s situation is unique, so use the questions below as a starting point for conversations to have with your healthcare team and family to help you make the best choice for your situation.
Should I stay at my current position?
If the position you are currently in is no longer working for you or with you, it may be time to start thinking about why. Are there tangible things your employer could do to make your job easier?
The European Directive on Equal Treatment in Employment and Occupation requires that all employers offer reasonable accommodations to employees with disabilities to ensure equal opportunity within the workforce.
Is the lighting in your workspace bothersome? You can ask for it to be changed. Is your desk too far from a restroom? You can ask to be moved. If your difficulty with your job stems from things that could be changed in your environment, talk to your manager or HR department to see if they can help.
If what you need changed at your job is less tangible, and more about how you feel at work, consider a few things:
- What is making you stay at this job?
- What are the consequences of leaving?
- Do you feel like you’d be happier/healthier/less symptomatic if you left?
While this might seem unrealistic, for the sake of this exercise try to answer those questions without considering money. This is hard, but it might provide more clarity about how you really, truly feel about the job and the work if you are able to think about it beyond being a source of (much-needed) income. If money were no object, would you be happier without this job?
When I was in this position I made tons of pros and cons lists, I had endless conversations about it with my husband, and I fretted over it for months. In retrospect I realised that if I had just asked myself those three questions, I probably could have made up my mind a lot sooner.
Why was I staying? I loved my coworkers and the clients I served. I also felt a sense of obligation to them. If I left I worried about finding a new job, or going for periods of time without a job and if that would affect my self-worth. I knew deep down that I would be significantly happier if I left my job, but the fear of the unknown was paralyzing at the time.
Ultimately, I decided it was best for me physically, emotionally, and mentally to leave that job.
Will I have to disclose my MS at a new job?
The rules on whether you are required to disclose your MS may vary from place to place, but most disability protections state that disclosure is up to the employee. However, if you want to make use of reasonable accommodations, you do have to disclose to your employer.
This can feel very much like being stuck between a rock and a hard place. My personal philosophy has always been to disclose, and here’s why: If I ever need accommodations I’ll be able to get them, and if a potential employer discriminates against me because of my MS, I wouldn’t want to work there anyway.
I know the job hunt can be incredibly hard and accepting a new job can provide so much relief, but if this employer will not support you when you relapse, it’s likely not a place that you can be successful. Those of us living with MS know it’s not “if I get sick again” — it’s “when I get sick again,” so it’s important to be in an environment where you feel secure and supported.
Disclosing is a very personal decision, and one that is entirely up to you. But in my opinion, when considering whether or not to disclose, always remember to think about the future and try to anticipate your needs, and then think about if this employer can provide for those needs.
What if my body can’t handle a full-time job anymore?
It was very hard for me when I realized that I couldn’t physically handle the demands of a full-time job anymore. It’s a realization that’s emotional, complicated, and laced with fear.
If you’re in this position, try to think about it as simply starting a new chapter. I feel like we live with this antiquated idea that only full-time employment is considered successful and anything else means you are “less than.” I actually had to work really hard to retrain my brain on this idea because I felt like my worth as a person would drop if I didn’t work full-time.
As someone with MS, I often feel like I have to work harder than my peers just to prove I’m worthy of a job, so taking a part-time job would obviously show that I wasn’t good at my job or didn’t deserve it. But I was wrong.
Working part-time may be easier on your body, and more information is starting to come out that part-time workers are happier. The Netherlands is one of the happiest places on earth and more than half of their population works part-time. Coincidence? Maybe, but I like to think not.
MS has likely made you think outside the box on many aspects of your life, so why not throw employment in there too?
How do I know when it’s time to stop working altogether?
If you’re in this space, I know how hard it is to consider this decision and I’m sorry that you have to do it in the first place. There is no easy way to make this choice because there are so many factors to consider based on your unique circumstances, and it’s a decision that can impact so many other aspects of your life. I have not had to make this decision, and I don’t know how I would approach it if I did.
What I do know is that, when faced with a tough decision, I try my best not to make them out of fear and instead focus on what will ultimately bring the most happiness to my life, even if it doesn’t look like a clear path.
Career-related decisions are difficult, and making major changes can have significant practical as well as emotional impacts on your life. Unfortunately, there isn’t a formula that will work for everyone. The best advice that I have based on my own personal experiences living with MS is to make decisions with you at the center — an idea that I know is very difficult for anyone with a family.
These decisions are required in order to keep you as healthy as you can be, and if you’re putting someone else first, it’s very likely that you’ll continue to put your health second or third. Put your own air mask on first, right?
In my opinion, it’s better to make choices with the information you have right now, because living life in anticipation of what could happen strips us of our ability to be mindful and to pursue happiness to the fullest. Your health, your happiness and your perception of yourself matter, so don’t be afraid to make decisions with that in mind.
NPS-IE-NP-00062 September 2020