Unique Struggles of a Young Adult With Myasthenia Gravis
Last updated: September 2023
Myasthenia gravis (MG) symptoms can begin at any age, most often beginning for females before they reach the age of 40. Anyone who has had MG as a young adult knows there are unique hurdles. If you are around your 20s and newly diagnosed, here are some things I learned to expect and tips to get through them.1
Risk of getting sick
Immunosuppressants are a common MG treatment. These drugs suppress the body's immune system. Immunosuppressants can limit the immune system's ability to fight infections and viruses. The more people we expose ourselves to, the more we increase our chances of getting ill. While on immunosuppressants, infections can be dangerous.1,2
But, it is impossible to stay away from everyone. We need to get blood drawn. Pick up our treatments from the pharmacy. Go to doctor's offices. Get groceries. You may financially have to keep working an in-person job. Interact with your caregiver. And you have all the more errands if other people depend on you to care for them.
All these times we have to interact with others may create anxiety about getting sick. It may make it scary to take additional risks, such as enjoying time with friends and family. We all just experienced and are still experiencing a pandemic. So we know how difficult, lonely, and isolating it is to be without company.
We may face tough dilemmas about how often we want to risk seeing other people casually. However, we can stay realistic about the potential health threats, wear masks when we go out, and potentially hang out with people in smaller numbers.
Feeling Like a burden
Anyone like me diagnosed with MG around their 20s knows how it feels to have been on the path to gaining independence and learning to rely on ourselves throughout our life. Then MG abruptly alters our reality - now we may depend on others for assistance and accommodations at times.
Filling out paperwork. Assistance with groceries. Help around the house. Possible need for extra care for your kids. You may feel like a burden to your friends and stress that they will think you are using them for your needs. Young people are busy, and for valid reasons, may have to say no when we ask for help. Nevertheless, it can be hard not to feel like people don't care enough about us.
We may turn to our family if we have no friends willing or available to help. This situation may be stressful, unwanted, and uncomfortable. Being embarrassed or unable to return the favor in the way you would like may make you feel like a burden.
For many reasons, we may find ourselves unable to work with MG: not having enough energy, recovering from a crisis, unable to speak or see correctly, too weak to work remotely, no luck finding a job that fits our needs, not able to secure a remote position, or we may do better with in-person employment and struggle to adapt to online environments.
Potentially the worst feeling of all with MG ... feeling we are a burden if we have loved ones kind enough to financially have our back when MG leaves us restricted to support ourselves. Financial responsibilities don't stop when our health declines. There will be a time and place in the future that you will be in a position to offer your assistance to those that helped you, even if this is through love, words, and support.
Trying to make work friends
Those with the energy, but not the capability to physically drive to a job and work, may look into remote jobs. But this means interacting and meeting fewer people than you would in a physical work location. So ultimately, you may feel more lonely overall in your life.
Many remote companies have team meetings and community calls where you can make an effort to turn your video camera on and be engaged in discussions and forming connections with people.
Going to college
All of the unique experiences with MG as a young person that I just discussed will come to light if you are in the middle of or debating whether to continue school with MG. Schools are typically accommodating to all the limits MG may pose.
When choosing if continuing college or post-grad is right for you, consider the reward and if it is worth all the accommodation you may have to figure out. Online school is a great way to receive a degree without adjusting to living on campus or getting to classes.
Weigh the accessibility of the school and accommodations when you pick your school. Also, be realistic if your career path is MG-friendly. There are so many students at college campuses - I can guarantee you will find individuals willing to help you out in any way you need.
Dating with a chronic disease
Avoiding social places and gatherings, fearing you are a burden to others, financial struggles, not obtaining a degree in person, and remote work can limit our dating opportunities. And on top of that, we must overcome any self-doubt we may have about ourselves because of MG.
In my experience, it is common for MG to damper confidence. It can make us worry people will see our disease as baggage, view us differently, make assumptions, or fear a future with us because of our limitations and accommodations.
Many of us consider our relationships to be people we take the risk of seeing in person. Dating apps are a great way to meet people online and are very popular. They allow us to eliminate potential dates that aren't compassionate and turned off by MG, because you can let people know about it in your bio.
Social gatherings and events that apply to your hobbies and interests are also great ways to meet people. Online video meetings and talks have become increasingly popular since the pandemic if you want to avoid meeting people in person.
Not feeling supported
People didn't check up on me after MG, yet I went off the radar. How would they know I was struggling if I wasn't telling them? Young people are busy working on their careers, tackling school, saving money, starting their families, and going through personal struggles. I used to directly associate the difficulty of maintaining relationships as caused by MG, which set my illness journey on the wrong path.
Our loved ones may take it personally that we cannot hang out or go on social outings. They may not want to accommodate our limitations. They may be too busy with their own life. Whatever the reasons, MG can help us see how compassionate people in our life are. And the struggle to filter out those who care about us will deepen our relationships with those that do.
My most frustrating MG symptom is _____.