I looked just like everybody else. I came to school every day, I talked to my friends, I did my homework. I was involved in multiple activities, and I cheered at the football games every Friday. The thing is I wasn’t like everybody else. What most people didn’t know was that during that period of time, nine months of my junior year, I was battling an illness called Median Arcuate Ligament Syndrome, or MALS for short.

I’ve had stomach problems since 3rd grade, but for years my doctors couldn’t find out what was wrong. The pain would come for a few weeks and then it would disappear for months at a time. However, during junior year, my stomach pain never came to a stop. I would wake up in the middle of the night crying from pain. An ER doctor told me “it’s just stress” and I should “find a hobby.” I felt alone in the world and that I would be stuck with this pain forever.

I ended up getting diagnosed by an ultrasound tech named Carol, who I still refer to as my angel. Once I got diagnosed with MALS, I learned it required a surgery to fix. I thought I would get the surgery in no time, but I was wrong. It was another six months before I finally had the surgery at the University of Chicago. While all of this was happening, most of the people at my school couldn’t tell anything was wrong with me. I sat in a chair instead of standing in my choir class every day, but people were so unaware of my actual issue, they thought I had knee problems. While I had stomach pain 24 hours a day, MALS is still an invisible illness to everybody else.

The point of this article isn’t for me to complain; it’s to spread awareness. When I learned more about MALS, I learned it’s still an extremely new illness so doctors still don’t know much about it. None of the doctors I went to had ever heard of it before. MALS is most common in teenage girls and its symptoms are pain near the celiac artery, nausea, dizziness, and increased pain after eating or while lying down. The pain comes from a ligament that’s blocking the blood flow from the celiac artery to the stomach. The surgery cuts that ligament and releases the blood flow. The University of Chicago hospital is the #1 hospital in the country for the MALS surgery, but there are about ten other hospitals that perform the procedure as well. For years, girls with MALS had been misdiagnosed as having an eating disorder because it hurts to eat. If you know anyone with similar symptoms, please pass this information onto them. Or if you know anyone that works in the medical field, please do the same.

Although it’s still rare, MALS is becoming more and more common. I want as many people as possible to learn about it, so that way they can get diagnosed and fixed a lot faster than I did. This Washington Post article tells the story of another woman who battled MALS for 5 years. Here are some FAQS about MALS from the University of Chicago and here is some information about the surgery. Thank you for spreading the word and please let me know if you have any questions about it!

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CC BY-SA 4.0 An Invisible Illness by Cami is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

7 Comments
  1. Gigi 10 months ago

    Hi Cami! Thank you so much for this piece of writing because I didn’t know about this illness, and it inspires me that you would talk about this publicly. I think people need to be more aware of what others are going through or at least treat them with kindness and with no judgement because we never know what someone may be battling with. I think you’re really tough for going through this and pushing through this. Thank you again for this!

  2. Sharlee 10 months ago

    Cami, this is a powerfully written personal narrative on MALS, and thank you very much for sharing it on Youth Voices. You certainly know your audience well, and how to write to them. Your introduction is strong, but your facts and support are also very well placed. If you ever publish another piece like this, I would really like to read your opinion on misdiagnoses with MALS.

    Some people who rarely go to the doctor may not know that misdiagnosis is popular among the medical community simply because there have been more studies done on Caucasian men than any others. For example, the symptoms of an oncoming heart attack is different for women. Men do not experience lightheartedness and a crushing pain within the chest as women do.

    Again, a very well written article! Hope to hear more from you.

  3. Victoria 10 months ago

    Hi Cami,
    Thank you for sharing your story:). No teenager should have to deal with that kind of prolonged pain. I really liked hearing your story, and learning about MALS, because I had no idea it existed. My mom suffers from the same symptoms and there hasn’t really been any diagnosis on the chronic pain she has, so I will definitely talk to her about this. The goal of your article is coming true!

  4. Jessica 10 months ago

    Wow. This story is really powerful. I think it is awesome that you are using this terrible experience to spread the word and educate people about this disease. It is important to treat everyone with kindness, because you never know what invisible illness they are dealing with. Thank you for sharing your inspiring story and stay strong.

  5. Will 10 months ago

    I personally had no idea that MALS was even an issue, and this article really opens my eyes to how I can’t be judgmental of other people’s problems. Did you get the surgery and is it no longer and issue for you? Also, do you know anyone else in your life with MALS?

    • Author
      Cami 10 months ago

      Hi Will, I did get the surgery in March 2016. My symptoms were gone most of the summer, but have been back since the end of August. Even though I am feeling better than I did last year, I am still not entirely healthy. And yes, I actually have a friend who was recently diagnosed with MALS. She had been having the symptoms as me, and when she learned I had MALS, she got tested for it, and sure enough she has it too.

  6. Manwinder 10 months ago

    Hey Cami,
    It is not easy coming out and talking about something you’ve had to deal with for a very long time that causes you pain. You can never really tell what a person is going through until you ask the person. Like for example, I had no idea about this problem you were facing until I read about it in your article. If more people talk about their issue like you just did, the word about MALS will spread like wildfire. I really liked reading your article. Also, I want to thank you for teaching me about MALS.

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