This past Monday was National Techies Day, and we wanted to celebrate the day by featuring one of our community members who happens to be a (super)woman in tech! St. Louis community member Melanie Stone has helped us on a handful of occasions with our technology (thank goodness!) and we are so grateful for her knowledge and expertise. Read about her experience working in tech and her personal journey with myasthenia gravis.
Meet Melanie Stone:
What is your name? Where are you from?
MS: My name is Melanie Stone. I currently live in Jefferson County, MO, but I am an Air Force Brat and lived all over as a child.
What is your role in the MG community?
MS: I am a MG patient.
Are you able to work? If so, what do you do for a living? Or, how do you spend your free time?
MS: Yes and no. If I didn’t work from home, I would not be able to hold down a job. Additionally, if I didn’t have a neurologist who treated my brain fog, I couldn’t do the knowledge work that allows me to have a job at home.
What is it like working with myasthenia gravis? Do you have to make adaptations?
MS: I’ve had to change a lot. Working from home takes care of most issues I would have had. I have only traveled for work once since I’ve been sick, and it was awful. I've had to take more medication to cope but have increased side effects. I've tried expressing my limitations such as avoiding the stairs to my boss but, she'd take me on really long ways on steep slopes with no handrails as an alternate and that wasn't any easier. So, I won’t travel for work as a result. It’s impacted my job searches; companies wouldn’t hire me or wanted me to reduce my requested wages by a significant amount.
Being with a good employer is important and being able to direct my own work makes it even better. I can rest during the day when I need to or keep my camera off if I’m not up to doing my hair and getting dressed.
How long have you been living with MG?
MS: I became symptomatic at age 12 and went into remission at age 22. I became symptomatic again at 38. So, since 1992 or a cumulative 15 years.
Prior to being diagnosed, had you ever heard of MG?
MS: No. I definitely had not. Neither had most doctors I encountered.
How does MG currently affect you today? (symptoms/treatments/etc.)
MS: Financially (laughs). The medication my doctor uses to treat my brain fog is not covered by insurance; it’s fairly expensive, but I cannot work without it. I worry about my retirement savings because of our lack of public healthcare in this country and insurance companies being able to deny care to edge conditions because of our lack of statistical significance.
But, I am thrilled that out of the tragedy of COVID came the realization that work can be done productively remotely. That will mean more disabled people being able to work in the long run!
In your opinion, what is the biggest need you see in the MG community?
MS: I feel the biggest need is the ability to work remotely. We need independence, both for quality-of-life reasons and as a protection against being trapped in abusive relationships.
It would also be nice to have a legitimate way to pool medical issues known across the community (i.e. autoimmune patients and hormonal treatments like birth control) that would never make it into a study which could then reach our GPs and OBGYNs. Autoimmune patients are routinely excluded from any medical studies that are not about one of our specific conditions.
How has myasthenia gravis impacted your own life (other than being physically symptomatic)?
MS: It really impacted my perceived self-worth for many years. I felt like I was "less than" because my body didn’t work as well as others, and I had to be grateful for whatever treatment I got from those close to me and just be thankful they were there at all. I also thought I was dumb due to the brain fog. No matter how hard I tried, I couldn’t do well on many tasks, especially rote recitation. Once I went into remission and realized I was actually smart, I was shocked at how much easier everything was for me.
But, it took that remission for me to realize that, even when I’m symptomatic, I am a good person who deserves equally good treatment and I will no longer settle for poor behavior in relationships. I’d rather be alone than treated badly.
What have you learned from having an MG diagnosis? Has it taught you anything?
MS: Having MG has taught me how far we still have to go to accommodate disabilities in schools and workplaces. I think it has also taught my children that things that are easy for them might be extremely difficult for others, so they should help when they can.
Is there anything else you would like to add?
MS: Quite often, it’s possible for those with our disability to hide it, but I really think it is important that we point out our obstacles to others. Our employers, neighbors, and schools could then keep that in the back of their mind (maybe then we’ll have fewer jerks giving us a hard time for using accessible parking spots and other accommodations without being in a wheelchair!).