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Nicole Gustafson

“All I Wanted Was a Diagnosis”

Updated: Nov 12


For as long as I can remember, I’ve struggled with severe pain after eating. The frequent distress turned simple tasks, such as making it through class, into grueling endeavors. You don’t always realize that something is wrong when you’re born that way; and I tried to convince myself that I was fine for far too long. My symptoms steadily progressed to the point where I couldn’t bear it any longer. I determined that “normal” people did not live like this, I shouldn’t have to either.

I saw doctor after doctor, and underwent countless tests. But they all drew the same conclusion: everything seems normal, but let’s try “X, Y, and Z” and see if that helps. What frustrated me the most was that my condition was virtually invisible. I wanted nothing more than to switch bodies with someone for a day, so they could understand what I’d been experiencing. Years went by, my health significantly declined, and my faith started to waver. Eventually, I began to question if my symptoms were even real. It just didn’t add up that I was in so much pain, yet the professionals were nearly certain that I was fine. The sheer exhaustion caused me to ask myself, could this be all in my head?

Eventually, I was referred to a vascular specialist. After the initial exam, he was confident that I had the anatomy of MALS. I didn’t get my hopes up because I had heard many false hypotheses throughout the years. Reluctantly, I had yet another abdominal ultrasound; and to my delight, this one was different. Results showed exactly what the surgeon had suspected, and a follow up CT Scan confirmed it; I had MALS. I finally had an answer, and I couldn’t have felt more relieved. After almost nineteen years of despair, I found the meaning in the mayhem.

Most people would never want to be diagnosed with a medical condition. It was shocking to me when I reached a point in my life when all I wanted was a diagnosis. Illness has a sneaky way of creeping into people’s lives. It can take you by surprise or string you along for years. Both of which are equally devastating. Every person who is ill, whether they have been diagnosed or not, has days when they just want to give up, and that’s natural. Nevertheless, the mind and body are extremely resilient and can handle more than you’d think. Sometimes your limits need to be pushed in order to realize that all you need is the right mindset to weather the storm.


 

When dealing with the frustration and emotional toll of a chronic condition, it’s essential to find ways to care for your mental health as well. If you’re feeling low, consider trying out Shadow’s Edge, a game created to help young people process difficult experiences through journaling, art, and self-expression. This unique, therapeutic platform provides a virtual space for reflection and emotional release, letting you explore your inner world and connect with your feelings in a constructive way. In moments of doubt, remember there are resources out there to support you.

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