A national survey of more than 3,900 individuals with migraine reflects the impact the disease has on their life beyond the pain and frustration of finding an effective treatment. Many respondents reported difficulty receiving a diagnosis when they were young and said they continued to feel stigmatized by their disease.

Results released at the end of August 2016 show that 61% of respondents began experiencing symptoms of migraine before the age of 19. However, only 26% were formally diagnosed before they were an adult.

“No one took my symptoms seriously until I was in my 20s,” migraine.com patient advocate Kerrie Smyres said in a press release. “When I was a kid, most people thought I was making excuses to skip school. In all those years, that my symptoms were dismissed, I internalized the stigma of migraine.”

Many respondents reported they continued to struggle to fight the stigma of migraine. Most said they felt others didn’t understand that migraine is “not just a headache” and constantly worried about disappointing people.

As for the treatment of migraine, only 40% of respondents said they were currently satisfied with their treatment plan. Most had tried over-the-counter, abortive, preventive, and rescue medications, as well as alternative or complementary therapies.

The Migraine America 2016 survey was conducted online by Health Union, LLC website migraine.com between May and June 2016.

“I really believe something like this can show the impact of migraines and help move beyond the stigma, Katie Golden, a migraine.com patient advocate said. “It can be used by those of us with the condition to educate the people in our lives. You pass these results—third-party results—on and it helps validate what we are saying.”

Find more results from Migraine in America 2016 on migraine.com.