Brenna Crowe, diagnosed at 21

In between my sophomore and junior year in college, I was hospitalized for three days because I had big, red bumps all over my legs that hurt so bad I couldn’t walk. I was diagnosed with a condition called erythema nodosum. When the bumps starting going away, I was released and told that I had Crohn’s disease and that had been the cause of those painful bumps. I thought that was a weird diagnosis because I didn’t have any other symptoms of Crohn’s, but I didn’t question it – the doctor knows best, right?

I went back to school in the fall, and I continued to get more and more sick. I was constantly itchy from head to toe; I had a really bad cough that kept me up all night as well as severe back pain. I got winded easily and had fevers and night sweats. I got dizzy all the time and every time I ate or drank my stomach hurt.

I was living at college and went to see the nurse on-campus. I also went home multiple times to go to my family doctor. When I told them about the health changes I was experiencing, they each explained that the back pain was from my scoliosis and the other changes aren’t concerning because I was probably just ‘burning the candle at both ends.’ 

When I explained that I was constantly itchy, I was told that it was all in my head. They gave me medicine to help me sleep, but it didn’t work and instead everything got worse. I went to the doctor many times but always got the same answers. I really started to question whether I was making it up. If multiple medical professionals were telling me that it was all in my head, maybe it was. Still, something in my gut told me that I wasn’t crazy and that the itching was real.

“Looking back, I wish I would have trusted my instincts more. I knew that it wasn’t just ‘in my head’. I should have also pressed to get more answers and advocated for myself.”

On a few of those doctor’s visits I was able to convince them to give me a blood test. The results were always slightly abnormal and showed that my liver levels were a little off. No further action was ever taken and no one seemed to be concerned. At the end of my junior year I went home for the summer and back to see my doctor again. This time I got a call afterwards and was told that my blood work was slightly abnormal and that if I felt light headed (which I had the entire school year). I should go to the hospital because I might need a blood transfusion. The nurse also advised me not do anything too strenuous that weekend. They never asked me to come back in for a follow up visit. I didn’t go to the hospital or lay low that weekend – why would I? I was feeling just as bad as I had all year!

My mom then made me an appointment to see a blood specialist and after a year of being told I was crazy and it was nothing, I was diagnosed with stage 4B Hodgkin’s Lymphoma. I had to take a semester off from college to be treated with chemotherapy, but I’m happy to say it worked and that I am now in remission and a college graduate.

Before I got diagnosed, I Googled my symptoms to try to figure out what was wrong with me. Cancer was listed as one of the possible causes but I never clicked on it because I thought cancer couldn’t happen to me – I was too young. Plus, after all of those doctors’ visits, they would have noticed symptoms of cancer, right? After I learned that I had Hodgkin’s Lymphoma I did go back and click on that ‘cancer’ link and every health change that I went to the doctor about was listed as a symptom. I wish I had known what cancer symptoms can be because I’m sure I could have been diagnosed sooner and treatment could have been easier.

Looking back, I wish I would have trusted my instincts more. I knew that it wasn’t just ‘in my head’. I should have also pressed to get more answers and advocated for myself. Doctors don’t know your body as well as you do and they aren’t always right. If you notice a health change that’s unusual, you are probably not crazy or overthinking it. Go get checked by a doctor- and if you don’t get the answers you’re looking for, get another opinion.

Symptoms

  • big, painful red bumps on legs
  • itchiness all over body
  • cough
  • back pain
  • shortness of breath
  • fever
  • dizziness
  • stomach pain after eating and drinking