Ever since she was 11 years old, Alison Bergblom Johnson, 42, has experienced severe, often days-long migraines that leave her bed-bound, speechless and suffering. For the last several decades, Johnson, who has also been diagnosed with bipolar disorder, has linked her migraines to PTSD that she has experienced as a result of childhood sexual abuse.
Most of the time, Johnson, an artist and arts educator, has managed to keep working through all but the most severe of her migraines. But then, a few years ago, their frequency and intensity increased to the point where Johnson essentially could do nothing but shut herself away from the world for days on end.
Johnson’s migraines are awful. The experience, she said, feels like, “an ice pick is jabbing into the left or right side of my head. I’m vomiting. I have insomnia, giddiness, nasal congestion, anxiety. Basically, I feel like I am going to die.”
With her migraines’ increased assault came flares of Johnson’s PTSD. Sometimes it was hard to decipher if her aching head caused her PTSD or if the PTSD had caused her aching head.
“I wrote my neurologist a note saying, ‘These migraines are killing my mental health and exacerbating my PTSD and I don’t know how I can live like this. What can I do?’” she recalled. “She wrote me back and said, ‘I think your PTSD is exacerbating your migraines.’”
The truth was that the cause of her migraines didn’t matter: Johnson, already barely scraping by on an artist’s salary, was finding it almost impossible to work and her bills were piling up.
By the beginning of 2023, Johnson’s financial situation was dire: Because she’d been unable to work for several months, she’d hadn’t been able to make rent on her apartment. She’d been working with a physical therapist for years, and by January her migraines were beginning to let up significantly, but she’d nonetheless dug herself into a financial hole. Her landlord was threatening her with eviction.
Worried about what could happen if she lost her apartment, Johnson talked to her friend Kyle Tharaldson. After hearing about Johnson’s predicament, Tharaldson, a Twin Cities-based musician and composer, suggested that she create a GoFundMe page telling friends and neighbors about her predicament and asking them to donate money to help pay her back rent and get her back on her feet.
To Tharaldson, the crowdfunding approach made sense. “We had had some discussion about her ongoing struggle financially,” he said. “I’ve tried to encourage her in any way I can.”
Even though she’s always been outspoken about her mental illness, Johnson admitted that she felt reluctant to put herself out there and ask for community support around her mental health. It felt too public, she said, and she wasn’t sure how people would take it if she asked for financial help.
Tharaldson said he has always admired the way Johnson’s been so open about her mental health struggles. She had nothing to be ashamed of, he said, and setting up the fund just made sense: “I said, ‘You need to do this.’ She didn’t have enough money coming in to cover her rent. She was in a bind and people could help.”
Finally, Johnson took a deep breath, went online and created the fund. “He hounded me until I did it,” she said of Tharaldson, “and then, he made the first donation.”
Different from cancer?
It’s not unusual to hear about friends and acquaintances creating crowdfunding campaigns to help fund treatments or recovery expenses for physical health problems like cancer. But crowdfunding campaigns for individuals going through mental health struggles are less common, said Shannah Mulvihill, executive director and CEO of Mental Health Minnesota, a St. Paul-based mental health advocacy and support nonprofit.
“It’s constantly in my Facebook feed: someone struggling with some physical illness who needs donations for support,” she said. In those cases, community support runs high, Mulvihill said: “There’s a support group, people bring you casseroles.” But it’s different with mental health crises. “We don’t talk about mental health in that same way and so people are not forthcoming about their needs because they perhaps feel like they don’t think other people will support them. I’ve never seen a fundraising campaign attributed to mental illness.”
Mulvihill believes the reason she’s never seen this kind of online fundraiser is “unfortunately an example of stigma and discrimination that are still alive and well around mental illness.” Because there is still shame associated with mental health struggles, because most people still don’t consider them to be as life-altering as physical conditions like cancer, people experiencing exacerbations of mental illness don’t often reach out to their community for help and support, Mulvihill said. They might worry that others will judge them or think that they are forever scarred by mental illness and unable to recover.
That culture of shame only makes it harder for people in crisis like Johnson, Mulvihill said. “Maybe because people haven’t been willing to share their experiences with mental illness, others don’t hear about the effects of mental illness in the same way that people hear about the effects of physical illness on their ability to go to work.” That ends up making it harder for everyone.
“At the end of the day,” Mulvihill continued, the culture of shame around mental illness is “why people don’t often vocalize that they need some help.”
This silence has a broader impact, she added. “We see the effects of that in the population of people with mental illness who are homeless and not getting the care that they need, because when they aren’t doing well they lose their job, they might lose their apartment, lose the connections to a support system or insurance. It’s just a spiral that occurs that we don’t see as often with physical health.”
Because mental illness is something that can come and go, it also makes it difficult for people in mental health crisis to reach out for help from the larger community, Mulvihill said. Physical illness can be time-limited, as in, “this is how long I will be getting chemo,” but mental illness is harder to define in the same manner.
That’s been the case for Johnson, whose mental health struggles have had an on-again, off-again quality.
“When you have surgery, you take some time off and then you’re done,” she said. “In those cases it is more acceptable for people to fundraise.” In her own case, Johnson explained, the decline in her mental health (combined with an increase in the intensity of her migraines) “happened at a much slower pace. I didn’t want to fundraise at the beginning. Then, I was so incapacitated by the migraines that I wouldn’t have been able to do it. Putting together words was really hard.”
Though it can feel frightening to step forward and tell your community that you are struggling with your mental health, Mulvihill said that every time someone takes the risk and asks for help, it makes the process easier for others.
“I applaud the bravery of any individual who says, ‘I am struggling because of something related to mental health issues,’” she said. As more people make these kinds of requests, they will start to feel normal, and discrimination and misunderstanding will begin to fade.
Tharaldson said being open about his own life struggles is his way of busting discrimination: “I think most people are overly concerned with their public image and play their cards too close to the vest. As a result, one of things I take pride in is being open in my life.” He’s also proud of his friend for her own openness and glad she finally decided to ask for help. “That is something I very much admire about Alison. She’s had a lot to endure. And she’s being open about that. These are the kind of things that a lot of people might hide.”
‘People want to help’
At GoFundMe, there’s been a steady increase in fundraising campaigns based around mental health issues, said Heidi Hagberg, director of corporate communications for the Redwood City, Calif.-based company.
A distressing string of national tragedies have led to greater awareness of the importance of supporting mental health, Hagberg said. This greater awareness is connected to a growing willingness to reach out for financial help — or to raise funds for others in mental health distress.
“One thing we’ve seen is when communities go through a tragedy like a mass shooting or a string of COVID deaths, people started creating mental health funds to help get people therapy,” Hagberg said.
She also credits a more open attitude among celebrities like Selena Gomez who share their personal histories with mental illness and campaign to help others. In 2020, Gomez created a GoFundMe campaign called The Rare Impact Fund, a charitable branch of Rare Beauty, her cosmetics company. “They are trying to raise money to help people access mental health care,” Hagberg said. So far, Rare Impact Fund’s GoFundMe page has raised some $530,000 to support organizations that have created evidence-based programs focused on mental health.
While she acknowledges that “mental health specifically is a very personal experience for people,” Hagberg said that she is seeing a shift in that attitude: “As society is changing, the stigma that goes along with mental health is also changing.”
Crowdfunding campaigns can make a significant difference in the life of a struggling person — and help those who care about them find a concrete way to lend a hand.
“People want to help,” Hagberg said. “When your friend is in the hospital or ill or struggling, the first thing you ask is, ‘What can I do? How can I help you?’ People use GoFundMe me not only as a way to get help but also as a way for other people to give help.”
Taking a risk and going public with her need for support ended up being a good thing for Johnson, who met her $10,000 fundraising goal in less than a month. The added financial cushion means, she said, “that I will be able to pay my back-rent amount.” And with the financial burden lifted, her physical and emotional health are also coming back into balance.
“If I’d felt this way three months ago, I wouldn’t have needed to ask for help,” Johnson said of her migraines’ recent retreat. And she is feeling buoyed from a mental health standpoint, knowing that there are people in the world who, once they realized she was struggling, were willing to step in and help.
Tharaldson, who encouraged Johnson to ask for, “the amount you need to be whole,” is glad to hear that the fundraising campaign was successful. “I think she’s in the process of a transition from feeling at the mercy of her life to feeling in control of it,” he said.
The leeway that the money gave her has bought Johnson recovery time and a renewed faith in humanity. If she hits another mental health low point, she now understands that if survival becomes a struggle, it is OK call on others to help make it safely to the other side.
“I am so grateful I am resilient,” Johnson said, “but I’m sad that I have had to be.”