Making Life More Positive and Happy
Christa Whightsel won’t let pain dictate her happiness or existence. After living with pain stemming from pressure-related headache and complex regional pain syndrome (CRPS) for nearly two decades, she understands tomorrow is never promised. She knows illness can strike anyone at any time, extinguishing dreams of the future. Yet she is determined to fill the world around her with as much love and positivity as she can.
In 2000 (and a week shy of her 13th birthday), Christa was walking down the hallway of her middle school when she suddenly felt indescribable pressure in her head. Her next recollection was waking up on the ground to a concerned teacher standing over her head.
“I would pass out two to three times a day, every day,” shares Christa. “Eventually, my teachers stopped helping me. Thinking I was ‘passing out’ for attention, the school district intervened. I was told I could no longer attend classes and needed a home tutor.” For seven months, Christa was questioned and judged; everyone thought she was crazy.
Finally, a doctor noticed Christa had a papilledema (a condition in which increased pressure in or around the brain causes part of the optic nerve inside the eye to swell) in her eye. When discovered, the pressure had already caused much damage. She would randomly lose her vision, her eyes would sometimes see colors as the wrong ones, and she ended up with complete peripheral vision loss.
She was finally diagnosed with pseudotumor cerebri (PTC), also known as Idiopathic Intracranial Hypertension. PTC is a condition where pressure increases around the inside of the skull for no apparent reason, causing headaches and vision problems. It mostly affects women between puberty and 25, and symptoms mimic a brain tumor though no tumor is present.
Christa was fortunate. A leading PTC expert practiced at Ohio State University Hospital, the hospital in her town. She started Christa on a strict diet and medicine treatment program. “Pressure-related headache is different than migraine,” explains Christa. “The only way to remove the excess fluid and pressure in my head was through medication or undergoing a lumbar puncture.” But pain can return within 24 hours due to more fluid production. In total, Christa has had a dozen lumbar punctures with four of them needing a blood patch.
She describes the pain as pressure starting at the base of her skull that slowly radiates upward until her eyes feel like they will pop out across the room. These symptoms are followed by losing consciousness for upwards of a minute. (Once lateral on the ground, the pressure shifts and she comes to.) Once she even experienced temporary blindness, which lasted a few hours until she was able to have a lumbar puncture. After waking one too many times bloody and bruised, Christa has learned to get to a safe place before passing out.
Christa found relief in the form of a low-sodium diet, a diuretic, and lumbar puncture as needed. Water walking and yoga were also beneficial to her for a period. She also tried an opioid, but having a high tolerance for pain, she didn’t find them overly helpful and they were discontinued. Birth control made her symptoms tenfold worse.
As her life became livable again, Christa excitedly returned to school for her 8th grade year. But her joy was short-lived; cruel kids harrassed and bullied her. She was made fun of for her short haircut (a necessity when she thought she would need a shunt). Immature boys made a joke about dating her.
Christa’s parents transferred her to a private school for high school where she was able to start over and thrive. By her sophomore year, her migraine and pressure-related headache were practically in remission. Christa became heavily involved in theatre. She loved acting and was determined to become an actor.
Not having a pressure-related headache episode for seven years, Christa enjoyed a new lease on life. She went to college on a scholarship for theatrical performance. But her pain-free days were limited. In 2008, Christa was diagnosed with CRPS, a progressive disease of the autonomic nervous system characterized by constant, severe pain.
“When I got CRPS, I thought that my life was completely over,” she shares. “I didn’t think I could go through being ‘sick’ again. Now I had a new disease and my pressure-related headache was recurring.” However, Christa learned that—just like before—she could make a life again, in spite of the pain.
“I may not be the famous actor that I wanted to be, but the skills I learned through acting have helped me be a better advocate for myself, and others living with my diseases.” She has also found a way to still honor her original dream: Christa is a professional YouTuber and Twitch streamer.
Tai Chi gives Christa emotional clarity and temporary relief. Rounding out her wellness routine, Christa relies on laughter, gaming, and being creative. “I laugh a lot,” chuckles Christa. “Trying to find the positive in all life’s ups and downs might be the best placebo treatment I have ever tried. In spite of everything, laughing gets me through every day.”
She also finds the mental and physical distraction of playing Minecraft (via a YouTube group) every weekend great therapy. “For people with chronic illnesses who feel alone, connecting via gaming or social media lessens the sense of isolation. It makes me socialize.”
Making awareness posters and creating artwork are important too. It gives her a sense of purpose and meaning by putting her in the driver’s seat of life. She explains that when she was initially diagnosed with PTC, the medical community had limited knowledge on the disease. “It was considered rare,” states Christa. “The more I become active in the community, the more I have found other women living with it being marginalized or blamed due to our plus-size status. There is a stigma that we have this disease due to being fat; thus, there is a lack of compassion or understanding—which I am trying to change.”
She emphasizes that she did not cause her migraine and PTC to happen. “I am not contagious; what I have you cannot magically catch,” Christa explains. “Furthermore, I am not to blame and I am still deserving of living a fulfilling life in spite of what I have.”
Thankfully, Christa has had strong advocates supporting her from Day One. Her parents actively sought out the best care. Her mom was her No. 1 champion; when no one believed her, she was by her side. “My mom could see it (the pain) in my eyes. She knew I was suffering, and was there for me through it all,” recalls Christa. “Both my mom and dad fought tooth and nail for me.”
And then she met a man named Joey, who is now her husband. When they agreed to meet in person after connecting online, Christa was nervous. “I had a cane and didn’t know how he would react. But my health was never an issue. To this day, he tells me he never noticed the cane—all he saw was me.”
Joey proposed on Christa’s second pain-iversary of her CRPS diagnosis. He told her he wanted to make the day positive and happy instead of down and gloomy. Christa knows how fortunate she is to have Joey. He is her advocate now, encouraging her to follow her dreams. “He supports me following my new passion of being a nanny, and is part of the reason I am so successful at what I do,” she gushes.
By being honest about her disease and how she is feeling on a day-to-day basis, Christa discovered many care about her well-being and want to be present in her life. It is really important to be candid. “I am a better person thanks to the empathy I’ve been taught as a result of my pain. Pain sucks,” she explains. “We need to share empathy and walk together. These pain burdens we carry are so much lighter when we share the load.”
To those living with head pain, Christa encourages you to breathe. “You can do this,” she stresses. “It is OK to cry, rage, and feel emotion; and don’t feel guilty doing so. You are trying to learn how to live life with migraine. There is no room to let the views of others cloud your perspective. You are amazing and strong.”
Christa Whightsel is a dreamer, entertainer, nurturer, and warrior. Outgoing and charismatic, her daily mantra is making life happy. She moves forward afraid of what joy she would miss if she didn’t. What matters to her is living a positive life… and bringing more laughter, acceptance, and compassion to the world.
“My diagnosis was not the end of my life, but rather the beginning. Don’t let the disease define who you are: You define you. You choose the narrative of your own story. Thus, the reason I refuse to let my narrative end with pain.”
Intracranial Hypertension Research Foundation: ihrfoundation.org
U.S. Pain Foundation: uspainfoundation.org