Throughout my late teens and twenties, I was really into my education and worked really hard on research. I did my undergraduate work in New Hampshire and then went to England for my master’s degree. I was driven, focused, and too busy to let anything get me down.
One summer, I was working at a camp and noticed a rash on my legs. It was extremely itchy and very painful, but my doctor and I assumed it was environmental because I was literally working in the woods every day. So I tried to ignore the rash and hoped it would go away when the summer was over.
I noticed other subtle health changes over the next year. I was getting upper respiratory infections constantly. I had strep throat in the middle of the summer, which seemed really bizarre. I also had pneumonia for my 30th birthday and remember thinking it was strange to have pneumonia so young.
At the same time I was much more tired than usual. I was used to having a lot of energy and keeping busy, but now I was getting tired throughout the day. I had to leave extra early for work, because I often was so tired I had to pull over and take a nap before I got to the office. This tiredness lasted for weeks and I thought it was my new “normal.”
“I went to my doctor and she told me it was probably nothing and advised waiting to see if it got bigger. I didn’t feel comfortable with that answer…”
One morning I woke up with a lump on my neck. I had fallen asleep on the couch the night before, and thought the lump might be from sleeping funny. I asked my mom if she thought it was something I should get checked out anyway. When she said yes I knew it was definitely time to go to the doctor—mother knows best!
I went to my doctor and she told me it was probably nothing and advised waiting to see if it got bigger. I didn’t feel comfortable with that answer, because I knew this was a big change already.
I was also concerned about all the other illnesses and fatigue I’d been experiencing, so I requested a scan or test to try and get some answers. We did an X-ray but still couldn’t find anything abnormal. The next step was going to an ear nose and throat specialist (ENT) because I knew something was wrong and wanted to figure out what it was.
The ENT felt my neck and I could tell from his body language that he knew something was not right. We scheduled a scan and the next thing I know we were going in for a biopsy, which revealed a diagnosis of Hodgkin lymphoma – stage 2B.
Looking back, I recognize that the rash, strange illnesses and fatigue were all subtle clues pointing to the diagnosis. Knowing your “great” is an excellent way to stay in tune with your body and notice those subtle health changes. It’s so important to bring these clues to your doctor and express how you are feeling.
Self-advocacy and persistence through the healthcare system is imperative. Being that younger patients may be viewed as more resilient, we may not be prioritized by doctors the way we should be. If I was not as persistent in getting a proper scan and a referral to the ENT my diagnosis would have gone undetected and progressed.
After this experience, I encourage my friends much more to get symptoms checked out, and advocate for themselves when they know something isn’t right.
Symptoms
- painful and itchy rashes
- frequent upper respiratory infections
- fatigue
- lump on neck
