Becoming the “Migraine Diva” in spite of the pain.
Jaime Sanders met her husband when she was 18 years old, got married when she was 19, and had her first child two weeks before she turned 20. She had been experiencing episodic migraine since elementary school; her mother, who had migraine disease herself, was able to spot the telltale signs when Jaime experienced her first attack at age 8. In the following years, she found that the migraine attacks often isolated her from her peers, who didn’t really understand the issues she was tackling. But she grew up clinging to what doctors had told her: that by the end of her teen years she would “grow out of it.”
But the doctors were wrong. In fact, Jaime’s third pregnancy marked the point where her disease kicked into overdrive. She spent the entire first trimester with a chronic migraine that was worse than any she’d experienced. In fact, she assumed from the severity of her symptoms that she had a brain tumor or another critical medical condition. But after seeing a neurologist and getting back clear results from an MRI, she had to come to terms with the likelihood that her migraine was here to stay—both the pain of headache and the other lesser-known consequences of migraine disorder.
The daily grind
“Every day I experience pain on some level, but that isn’t always the most disabling symptom,” she explains. “Having my cognition, memory, speech, and awareness affected is way more problematic than the physical pain or sensitivity to light, sounds or smells. Migraine steals your energy, thought process, ability to concentrate, and motivation, and I have to find a way to work around that every day of my life. There are no days off.”
Jaime has chronic migraine, which is defined as having 15 or more headache days a month. It is estimated that there are four million Americans who are chronic. Not only is Jaime chronic, her attacks have been intractable for years. Intractable migraine persistent migraine that is either difficult to treat or fails to respond to standard and/or aggressive treatments. What it really means is that Jaime has a migraine every day, 24/7 with no breaks in pain.
Unfortunately, she hasn’t found much that truly helps and she has struggled to control her symptoms and their effects on her life. The attacks she suffered gradually became more and more frequent and more difficult to treat. Over-the-counter medications no longer helped, and she sought out prescription medication, and eventually, preventive medication. She was also diagnosed with fibromyalgia, depression, and anxiety—issues she continues to struggle with today.
It’s ok not to be ok
Jaime has always approached her health problems with the attitude of ‘life goes on.’ She felt pressure to do everything until, finally, something her husband said got through to her.
“He taught me the biggest lesson I’ve ever learned, which was that it’s OK to not be OK,” she recalls. “In my mind I had to be this perfect mother, this perfect wife. I had to get all this stuff done because I felt guilty for being in pain all the time. I felt like I wasn’t up to par as a wife and a mother, and here he was telling me, ‘You don’t have to do that—we’re OK with how you are. You’re wonderful!’ And one day it clicked. I realized, if your husband is telling you you’re fine and there’s nothing more you can do, that you’re perfect in his eyes just the way you are … then you should be OK with not being OK, too.”
Finding a purpose
Jaime found a purpose in writing and advocacy. The biggest thing that connects her to others with migraine disorder is her blog, The Migraine Diva, which she describes as “a journey of discovery where I seek to find the best way to live a full life within the restrictions of pain.” She writes regularly for websites related to her chronic illnesses and is heavily involved in the community, both online and in person.
“Chronic illness has taken a lot from my life, but it has also brought me to a new awareness and calling,”said Jaime. “Creating my blog and writing about life with chronic illness has led me to the world of patient advocacy. I never would have thought that I would be a part of so many great organizations because of my pain.”
Jaime has become integrally involved in groups that help others with the symptoms and stigma around migraine disorder as an ‘invisible’ illness. She’s personally found help from nonprofit organizations like the Coalition for Headache and Migraine Patients (CHAMP), the Global Healthy Living Foundation (GHLF), and the patient advocacy group 50 State Network.
Jaime wants to expand her advocacy to either create a non-profit or work with another organization to focus on “medical deserts.” The terms refers to areas in the United States where access to health care is very restricted. Low-income minorities and those living in rural areas are most affected by the lack of access to doctors and lack of available medical education.
Connecting through the pain
It is vital to Jaime that people understand that “those of us with migraine are not lazy, unreliable or weak,” she explains. “We just happen to have been born with a migraine brain into a world that does not value nor want to recognize the severity and disability of migraine.”
Posting as “themigrainediva” on social media like Instagram, Twitter, and Facebook has helped her connect with others suffering through similar health problems. It has also given her the opportunity to recognize the strength she developed in response to her pain during some of the difficult moments.
“At times, my migraine disorder has made me feel less than acceptable, useless, and of less value because my life is so interrupted by pain,” Jaime says. “At the same time, I have also found strength in my experience. It has brought me through some very dark and low moments in which I made it through to the other side.”
Jaime fights another invisible demon – depression. She is raw and open in discussing mental health. Videos of herself during a panic attack, pictures of her crying, discussing suicide in her writing, and baring her soul during speaking engagements – these are the bold ways in which Jaime battles against stigma. The heart-wrenching way she bares her soul when discussing mental illness is powerful in making the invisible, visible.
Life beyond migraine disorder
When she’s not doing advocacy work, Jaime loves spending time with her husband Darnell, children Kiera (20), Keane (18), and Kamell (17), and two older dogs. Although she doesn’t follow a specific migraine diet, Jaime loves to cook and has a passion for clean, healthy eating. She loves using organic, farm-fresh veggies, meat, produce, and dairy from an Amish farm in her area. Pastimes that bring her joy include crafting and being outside.
Jaime Sanders is a wife, mom, advocate, and friend who also happens to live with migraine disease. Candid about her experiences battling the paralyzing effects of depression and physical torment that encompasses migraine, Jaime presses on.
“It is an evolving journey,” she explains. “Some days I feel more empowered and motivated and others I feel like a complete failure. Living with chronic pain is a roller coaster. I have good days, better days, and really awful days. My feelings and emotions shift with the tide of pain. What I have learned is that pain does end and that there will be better days ahead. I’ve made it through the storm before and I’ll do it again.”
American Migraine Foundation: americanmigrainefoundation.org
Coalition for Headache and Migraine Patients: headachemigraine.org
Global Healthy Living Foundation: ghlf.org
Move Against Migraine: americanmigrainefoundation.org/move-against-migraine
The Migraine Diva: themigrainediva.com
50 State Network: 50statenetwork.org
Suicide Hotlines and Help