This conversation explores the realities of balancing employment with the unpredictable nature of MG, including fluctuating symptoms, fatigue, and the emotional challenge of asking for help. Panelists share their experiences with workplace accommodations, remote work, communicating with employers and coworkers, and reframing accommodations as essential tools for long-term success rather than signs of weakness.
In our next segment, our panelists discuss how to recognize the warning signs of an MG flare, and the importance of tracking symptoms and triggers. You can watch all the highlights from the webinar here.
Transcript
Meredith O’Connor: Alright, so, shifting gears a bit … no pun intended. Let’s chat a bit about working with myasthenia gravis. So, for many of us, myself included, work is the place where the invisible nature of MG becomes a true daily performance.
And, you know, perhaps you look fine, you look able, you look upright, and then, well, that is until you don’t. And so, things like pacing energy, needing to ask for help, managing in that fluctuating fatigue. You know, those are not soft problems. These are very much clinical realities. And I say that with such enthusiasm for a couple reasons. You know, one, if you’re not living with MG, it’s incredibly difficult to understand that true impact that MG can have on, you know, normal day-to-day things like work.
And two, I think one of the most important things as MG patients is that we need to recognize that within ourselves, because it’s so easy to make less of things like fatigue or energy, because, you know, in our society, those are the things that everyone deals with, right? But in truth, these are the things you can’t necessarily push through as an MG patient. They’re real, they’re debilitating, and interfere with our quality of life.
And so, Jasmine, let’s start with you this time. I’m interested to hear, you know, what has navigating the workforce looked like for you, particularly when you’ve been symptomatic?
Jasmine Nathan: So, for me, when it comes to navigating my job in general, so, it’s interesting, because just recently I had a myasthenic crisis, maybe, like, two weeks ago. So, yes. So, I’m truly grateful to my coworkers and to my supervisor, because, just by me telling them and letting them know about myasthenia, they were able to assist me with my crisis. So I think it’s truly important that when you go into a work setting, that you make, not only just your people you work with and also your supervisor, you make them aware that you have a chronic illness in general, because I think it can assist you with just being able to just be open and being able to have what you need for your job to be able to complete your job.
I also have a reasonable accommodation as well that helps me to do my job. So, it’s just truly important, just for yourself, so that you can have a healthy work life, and not that every day is easy, but it’s just helpful for you in general.
Meredith O’Connor: Yeah, that’s … yeah, you said it beautifully, and I’m so glad, you know, it’s … you being here only two weeks after your crisis is a testament to the strength that it takes to fight this disease, so I’m so glad, you know, to see you and to be speaking to you today. So, really glad that your employer was able to work with you, too, so … Glenn, how about you? I know you’re retired, or res … but talk to me about, you know,
or talk to me about retirement. I guess work and retirement. What does that look like for you living with myasthenia gravis?
Glenn Cutler: As I said, I did retire from my, quote, real job. But I do have a side gig that I do a couple days a week. I wanted to say one thing in response to Jasmine. Like her, I was always one who shared my disability with my employer. But that’s not the case for everybody, and some people make a different choice. And you have to understand that by revealing and disclosing, there are lots of benefits to that.
But there’s some downsides, too, and I think we cannot negate those folks who decide I cannot be perceived. And if they’re not willing to share, then they cannot expect to be accommodated. And accommodation is critical for us. So, you know, like Jasmine, I’ve got a big promotion just before I really started my myasthenia journey. And I had to say to the supervisor, “I need a different schedule, I need you to understand that I can’t be at work at 8 o’clock every morning, because I have to get up and let my meds kick in before I’m really functional.”
And as I said, I had to, at some point, just admit that I couldn’t keep that level of strenuous employment and also maintain my stomach. Because for me, the work life was too stressful, so I just had to step away as soon as I could. And now, I think it’s important that I work when I’m able to work, I work remote. And I think it’s wonderful now, since COVID, that so many of us can be accommodated with remote work, and that people don’t actually think you’re less of an employee if you have to work or need to work often remotely, and I think that’s important. And my job that I do now, my little gig job, is totally remote.
And I’ve never even been in that office. But I log on a couple days a week, I do my work, and I keep in touch with them in many ways, but it’s just not face-to-face, and that works for me.
Meredith O’Connor: Yeah, that’s one good thing that came out of COVID, right? Like, the accepting the norm of remote work, if you will, and you definitely allude to some of the things about, you know, being vulnerable and having the guts to say, you know, I need help, which really you know, speaks to this sort of … the thing that many people struggle with is asking for help, right? And so it’s this identity shift of, you know, particularly with working, this fear of being seen as … or feeling unreliable. I know I’ve experienced that. Morgan, does that plan for you at all? Does that … does that resonate in any way?
Morgan Greene: Yes, I can relate to what both Glenn and Jasmine said when I was first diagnosed, I was on the job experiencing all these symptoms, so of course, it made the dialogue with my supervisor and my coworkers a bit more open, because they were seeing it in real time, and from there, they kind of had, like, an understanding to be able to support me.
And I was in a position where I could do things like take leave, or when I needed to have my thymectomy, you know, my supervisor was like, “Work from home while you recover and do different things,” because she was aware. Even though they didn’t have full understanding of everything that MG was, they understood that something seriously was happening with me, and I needed that flexibility and accommodation.
And that was really, really helpful. At the same time, I understand what it’s like to not want to be perceived as unreliable, and also feeling like your health status is risking your position, and your job is what gives you your healthcare, and you need the healthcare to take care of yourself and your illness, and it’s just a vicious cycle that you kind of have to work through, and from there, I’ve transitioned to positions where I’ve been able to have a reasonable accommodation to work remotely more than, you know, being in office and changing my schedules so that I don’t have to drive into the office every day. Just different things that kind of work best for me.
I, like I said, had a supervisor who knew everything there was to know about MG and my journey, and what was going on with me, and I’ve had supervisors who were just like, “Okay, you do what you need to do for me.” They don’t … they don’t need full disclosure, they’re just like, “Fine, like, do you. As long as the work gets done, we don’t have any issues,” so I think it’s important to find a job that meets you where you are.
And, you know, being flexible, so if you’re someone who just really, really loves your job, but it’s so stressful, and it’s so demanding, and you’re not feeling like you’re meeting standards because of your health, it may be time to, you know, do a shift into something else. And unfortunately, that is something that a lot of people can struggle with, having to make that sacrifice for their health.
Meredith O’Connor: For sure, and I think, you know, what I’ve heard from all of you, kind of, sort of speak to is this … this need for communication, and this continuous need for communication, because there’s going to be ebbs and flows with our MG, and it’s going to fluctuate, and we’re going to go into crisis, then we’re going to go out of crisis, and things like that, so it’s that … that need for communication, and … and … and being comfortable with what you’re communicating. Kathy, I know we’ve shared, you know, some experiences, swap stories, work stories. How has,
you know, your MG impacted your work or, you know, your relationship with work?
Kathleen Timothy: I love your company to be comfortable, you know. So I am extremely blessed that I work for the MGFA, and so, of course, they are very accommodating, allowing for rest periods and what I need. The issue with working for me, and I work remotely, the issue with working for me is that I don’t want to ask for help. I don’t want … It’s like, I don’t want to be perceived as ill in the workplace, of course. Everyone knows I’m ill, but I don’t want to be received … and that’s all on me. That’s not anything anyone’s ever said to me, that’s all everything I put on me. I was always a workaholic, and I expect to still reach that level, which I can’t.
So, asking for help is really difficult for me. The job does require some travel, and … flying is difficult. And I’ve had to ask for accommodations for that. And it’s … the organization’s been wonderful. I understand that it’s a special circumstance. But I think in any workplace, before anything, any accommodation can be made for you, you have to be able to ask for the help. And for me, that was just very, very difficult. I will push myself beyond where I should before I’ll ask for help, so … I’m working on that.
Meredith O’Connor: It’s a work in progress.
Glenn Cutler: If I could add one thing.
Kathleen Timothy: Whether or not your myasthenia and your brain is still there. Sometimes. Most of the time, my brain is still there.
Meredith O’Connor: Yeah, what were you gonna add, Glenn? Thank you, Kathy.
Glenn Cutler: I think we have talked about making sure your supervisors and those who impact your work life are aware. It’s also important that your co-workers, and maybe those who you supervise or work under you, are also aware of some of what you’re going through. They may not need to know as much about the specifics as a supervisor, who has some control over your work life.
But those people you work with don’t need to be left wondering why you do certain things, or … like, one of the simplest things is in meetings, sitting in an upright chair. I have severe core issue weakness, so sitting in a chair with no arms on the chair — those old meeting, straight-back chairs — just simply sitting in a meeting, I just couldn’t do that, because they would see me leaning over and trying … and not … and really fidgeting all the time, and they didn’t understand, but your downside folks need to know as much as your upside folks do about what’s going on, when you’re comfortable sharing.
Meredith O’Connor: Great, great point. Great, great, great tip. And I know, I mean, I can definitely relate, right? Like, I still struggle with asking for help, but … probably has to do more with my perfectionistic tendencies, but that’s a whole other story. But I think, you know, it’s conversations like these that really allow us to ask not just ourselves, but society, how we can support those living with things like invisible disabilities, or who face things like fluctuating symptoms, particularly in roles that may be demanding, like things such as high cognition, or leadership roles, or deadline-driven roles, you know, those are all
things to be mindful of. Or, you know, are there tools that have helped like, software and technology, or personal strategies to create more sustainability. And so I think the next, you know, part of this discussion is … is how do we … how do we navigate this, right? So anytime you’re in a work environment, or even school, because there’s many, you know, school is work for many people in this day and age, and … but it’s nice to keep some sort of checklist, or whether it’s in the back of your mind, or handy when you’re having conversations about these accommodations that we’ve all discussed thus far. So, accommodations that we often see the MG community advocate for, we’ve sort of talked about it here, but I’ll just briefly go over it: flexible schedules and environments, such as remote roles.
Taking scheduled breaks. Modifying the workload, accessible accommodations, such as written communications. And last, but certainly not least, is having a conversation with your employer about these accommodations. So, at the end of the day, when it comes to the workforce, I think it takes a mental shift to realize that this really isn’t about managing your attitude, right? I mean, certainly you have to come to terms with it on your own timeline, but it’s more about managing your nervous system. And … think about that for a minute. You know, it’s taken me a long time, personally, to realize that, especially, you know, someone who sets the bar high for themselves and has … values productivity.
It has nothing to do with being lazy or not even wanting to work. It’s about managing what your body can handle.