NEW HAVEN — Last week marked an important event for a young New Haven woman and millions like her, but for the most part, people were unaware the week’s designation even existed.
Sept. 28 through Oct. 4 was “Invisible Illness Awareness Week,” but 23-year-old Sydney Hysell is aware of it daily.
Many illnesses and diseases fall under the heading of “invisible.” Anxiety disorders, asthma, bipolar disorder, depression, diabetes, fibromyalgia, lupus, rheumatoid arthritis, and hypoglycemia are just a few. For Hysell, it is twofold. She suffers from both chronic migraines, as well as Postural Orthostatic Tachycardia Syndrome, or “POTS.”
Hysell has had either a migraine or bad headache every day since October 2012, with the exception of one day in 2013. It was a day she doesn’t forget.
“It was one day in the summer,” she said. “I didn’t have a migraine or a headache, and I went to a concert. It was exciting.”
Hysell is quick to point out there is a difference between a migraine and a headache. She said many people have told her they have migraines, when in fact, they have a headache.
“Migraines are neurological and there is no cure,” she added.
Although symptoms vary for each individual, Hysell suffers with throbbing, “ice pick” pain, nausea, vomiting, being lightheaded, chronic fatigue, brain fog, irritability, sensitivity to light and sound, insomnia, jaw pain and stiff neck, as well as others.
Hysell also suffers from POTS, which too, has no cure. It causes excessive heart rate when rising.
The young woman said when she sits up from a prone position, as in each morning sitting up in bed, blood cannot go to the right place at the right time. Hysell’s heart races whenever she sits up or stands, making it hard for her to breathe. She describes it as feeling like she ran a marathon just to sit or stand, and sometimes faints as a result.
Because of her illnesses, Hysell’s life has changed dramatically. Once active and spontaneous, she said she finally had to quit both nursing school and a part-time job last year.
“I was in too much pain and my meds caused brain fog,” she stated.
Hysell has tried more than 50 different prescription medicines to alleviate the pain of daily migraines and headaches, even ones normally given as anti-seizure drugs. Botox, trigger point injections and other procedures have been tried as well.
“Even if I can find something that takes one (migraine) away a month, it will be worth it,” she said.
Hysell said one thing people with invisible illnesses also battle is depression. Because she is constantly sick, Hysell can’t make plans and has lost most of her friends.
“They are sick of me not feeling good, and often say, ‘but it’s just a headache,’” she said.
Hysell said while practically becoming an invalid, she has watched many of her friends graduate college, start a career, get married and have babies.
“I have to push myself to get up to take a ride or go to my grandma’s,” she said. “Because of POTS, I have to sit down halfway through a shower to rest. What use to take me an hour and a half to get ready to go somewhere, now takes five hours and by then I’m too exhausted to go.”
Hysell said she doesn’t tell her story for personal recognition or sympathy, but to promote awareness.
“Not everyone who is sick looks sick,” she stated.
Hysell refuses to even try to get a handicap placard for fear people will think she is “lazy.” She said she can’t go to Walmart, or anywhere else to shop, because it wears her out to walk halfway through the store.
“My goal is to raise awareness of migraines, POTS and other invisible illnesses,” Hysell said. “I want to provide accurate information and stop the stigma.”
Hysell said she feels more funding is needed for migraines and other invisible illnesses. She added the government provides a small amount of research as compared to other, more well-known diseases.
“I also want to let people suffering know they are not alone and to always maintain hope,” Hysell said.
She said what helps her is spending time with people who understand and care. Connecting with people on social media who share similar problems has gained some new friends for Hysell. She also finds comfort in prayer, watching football, and spending time with her cat, “Twinkle.”
Hysell said for her, the next step is an atrial ablation on Oct. 29 in Morgantown, in hopes that it will help the POTS. Her final message is that she doesn’t want people to feel hopeless.
“There are a lot of options that can help people,” she said. “You just have to find the right one for you. I’m hoping sooner or later, they will find something so I can get on with my life. I’m going to finish nursing school — no matter what.”
Hysell said a few of her favorite websites for migraine information are www.healthcentral.com and www.mychronicmigraine.com. For POTS information, she relies on www.dinet.org.
Mindy Kearns is a freelance writer for Ohio Valley Publishing who lives in Mason County.