The story of Maisy
Once again, it is Rare Disease Day and once again I am conflicted. I have what most would consider to be a rare disease. The microvilli on my intestine are ingrown, thus preventing me from absorbing nutrients from food and relying solely on intravenous nutrition to survive. However, over 23 years, I have never thought too much about the fact that I have a rare disease. In fact, there are probably people in my life who still don’t know that I have a rare disease. My disease is unique in that I can basically hide it. It’s an invisible illness. Unless my intravenous central line is revealed or we spend an extended amount of time together and I start to shrivel up like a raisin from dehydration, people won’t look at me and go, “What’s wrong with her?” For a long time, I took pride in my ability to hide my illness and while I am extremely grateful that I am able to, it took me a long time to accept that it wasn’t actually something I had to try to overcome.
When I was younger, I missed a lot of school because I would get dehydrated easily or be hospitalized for days with an infection. However, I worked extremely hard because I was the type of kid who always wanted to get good grades and be the best student I could be regardless of my situation. My parents helped me find a balance between managing my health and being a successful student. We communicated openly with my teachers, had a 504 Plan in place just in case, I got my work done on time, I even took home extra work so I wouldn’t get behind if I feared I would be out of school the next day. Somehow, all of this got me labeled as a teacher’s pet who received special treatment and had the whole school wrapped around her finger. Looking back now, obviously I realize the students who said all of those things had way more going on in their lives than I did in mine, but as an already angsty middle schooler, feeling like my whole class was against me sent me into a downward spiral.
It wasn’t until college that I truly became my old self again. I made an incredible group of friends, many of whom were nursing majors who loved all the medical supplies that came with me. I began seeing a therapist at school, for typical stressed out college student reasons, but at one point we started talking about my health and how I was constantly running myself ragged trying to do it all. She helped me come to the conclusion that having this disease doesn’t have to be all of you, but it is a part of you. To be honest, I’ve never really taken the time to reflect on that conversation but I guess today is the perfect day to do so. Because I have an invisible illness I sometimes feel as though since people can’t see what’s going on with me, I need to act as though nothing is. In college, I remember attempting to complete Statistics homework in the hospital, doped up on IV Benadryl because one of my antibiotics gave me a reaction. Last year I landed myself in the hospital with sepsis, brushed it off as a tiny infection, and insisted on being on a video call for my job. Just a few months ago, I had surgery for a new central line placement on a Wednesday and was back in the office on Monday.
I have never been one to let things hold me back, and I have a very supportive family and friends to thank for that. I am also so fortunate that the particular disease I have allows me to continue to live my life (relatively) normally, despite a few obstacles along the way. I have spent a week away at summer camp, gone to college, traveled across Europe, met an amazing dude, found a wonderful job, am working towards a master’s degree, and fully insist on making the most of every day this life has to offer. However, as I venture further into the world of adulthood I am starting to meet more obstacles that have less to do with my disease and more about accessing the resources I need to ensure it remains a minor inconvenience rather than a death sentence. As I get older, I will have to find my own health insurance. If I want to move, I will have to find new specialists and a new delivery company. I will have to ensure the place I am living is clean and sanitary enough from me to safely set up my IV tubing and prevent infection. I will always have to have a refrigerator and a place for my small bureau of medical supplies. My coworker and I were recently joking about how I want to travel and wish I could just couch surf, but I would have to make pitstops along the way to plug my refrigerator in or find a place that’d be willing to house 7 bags of IV fluids every week. But I have never felt deprived of life experiences and don’t intend to start now. Though things may be more difficult or take more planning, nothing is impossible.
Rare Disease Day is about awareness, and awareness is generally about finding a cure, fighting the disease, or donating money. I don’t think Microvillus Inclusion Disease has a GoFundMe page. We don’t have colorful ribbons or water bottles or bumper stickers. We don’t have an entire society dedicated to research. What we have is a small Facebook community of incredibly strong, brilliant parents working together to make sure their kids live the best lives they can and grow up to be awesome human beings, who just happen to have central lines. I’ve never thought of MID as something you fight. Were that the case, I would be fighting against what has always been a huge part of my life and that just seems counterproductive and exhausting. I fully respect and support out of people who do work to raise awareness and find cures for diseases, and feel exceedingly grateful that mine is something I feel I can live with. It would be cool if there was a cure someday, I won’t deny that. But I’m 23 years in and doing pretty well so for now I’ll just keep on keeping on.