'It's just something you deal with': Erika Gilsdorf, creator of the 'Inside Out' campaign, talks about her experience with OCD
Editor’s note: This is the eighth and final story in an 8-part series of feature stories written in conjunction with the “Inside Out” community campaign to normalize mental illness.
Erika Gilsdorf used to go out of her way to avoid stepping on cracks when she was a little girl, after hearing the old superstition, “Don’t step on a crack or you’ll break your mama’s back.”
She lived with a constant fear of making some small misstep that would lead to something bad happening. She’d worry about the “What ifs?” — “What if I step on a crack and my mom gets hurt?”
She knew how “silly” that thought was, she says, but her anxiety over it was unstoppable. To ease her distress, she exerted the only control over the situation that she felt she had, which in this case was to stay away from those cracks. And then in other cases, as she got older, to check again and again that the door was locked so robbers couldn’t get in, or that her curling iron was turned off so it didn’t start a fire.
“As a young person, when I was little, I thought I was losing my mind,” the 52-year-old Detroit Lakes woman recalls today. “I didn't know what was going on. I was completely consumed with my anxiety and my checking behaviors, and worried so much about so many things.”
Erika’s parents kept her involved in sports and other activities to try and aim her focus elsewhere, but through her adolescence and teen years, her anxiety slowly snowballed. By the time she was in college, it was impacting her performance in school, and her parents told her she should see a psychologist. She was mortified.
“I was completely upset,” she says. “I thought, ‘This is it, everybody thinks I’m crazy.’”
Mental health wasn’t talked about then like it is now, and Erika had no idea why she thought and behaved the way she did. She felt completely alone in her experience. She didn’t know anything about anxiety, and had never even heard of Obsessive-Compulsive Disorder, or OCD, which is what she ended up being diagnosed with.
When her doctor handed her a pamphlet about OCD, and told her how common it was, she felt a surge of relief. She had gone to that appointment fearing the worst, almost certain she would be institutionalized, she says, but instead, “I found out it’s just OCD, and that there are ways you can learn to manage it, and help it, and ease it.”
“Immediately, I was relieved that I wasn’t alone and that there was information and books on it, and the doctor wasn’t shocked (by my symptoms),” she says. “That was a good way of realizing that it’s not the end of the world, that there’s help.”
In the decades since then, Erika has learned a lot about her OCD and how to manage it. It’s not something a person can ever be cured of, but she’s got tools at her disposal now to help her cope. If her anxiety starts building up again, she knows she can go back to the doctor to get some fresh perspective, and can dip into that toolbox to build a healthier way forward.
“It’s a good feeling” to get help, she says. “I spent my younger years being afraid of it, afraid of getting really anxious… But it’s not something you have to be afraid of. It’s just something you have to learn to handle, and there are professionals who teach you the tools to handle it.”
She’s gotten a lot of questions over the years from curious friends, family members and acquaintances who want to learn more about OCD, and she’s also heard negative judgements, stereotypes and stigmas about the disorder. Casual jokes about OCD are common — such as someone saying, “Sorry, must be the OCD in me” as they straighten a picture on the wall — but she says those jokes belittle the struggles of those who truly have the disorder.
It was Erika’s own personal experiences that inspired her to create the “Inside Out” community campaign, and to tell her story as a part of it. She wanted to show people what it’s really like to live with a mental illness, in an effort to spread information, understanding and awareness of how common mental illnesses are.
A producer at Leighton Broadcasting, Erika decided to use her talents and resources to create a video series about mental health. She partnered with Karen Pifher, of Becker County Energize, who was immediately on board about the idea, and from there the video series evolved into a community-wide campaign that included a Video Premiere and Panel kickoff event at M-State as well as a series of stories in this newspaper and exposure on local radio stations.
The 8-part series has examined eight different mental illnesses, including depression, anxiety, PTSD, schizophrenia and others. Each video and accompanying newspaper article have included information and advice from area mental health professionals, and have put a local face to each illness, with people from the Detroit Lakes area stepping forward to talk about their personal experiences.
“I really commend everybody for telling their stories in this series, because it is hard to tell people your most vulnerable side of yourself, that you don’t want people to see,” says Erika.
She admits that it hasn’t been easy for her to share her story of OCD. Though she’s had the disorder her whole life, she’s still uncomfortable with the idea of it being so public. She’s afraid people will look at her differently once they find out she has a mental illness, she says, or they’ll wrongly assume that she’s less capable than she really is — which is all part of the stigma that the “Inside Out” series is trying to erase.
She chose to put herself out there for “Inside Out,” she says, in hopes of helping someone else with a mental illness feel less alone, and to inspire those who are struggling — or know someone else who might be struggling — to seek help.
“I see so many people suffering, and with kids suffering, and they won’t get help,” she says. “I don’t understand that, because don’t you want to get happy and get back on track? There are very nice people out there who want to help…”
“Facing it and accepting it — that you’re struggling — is not a sign of weakness,” she adds. “It’s a sign of strength that you are taking care of yourself. It’s a sign of commitment to yourself that you want to have a good life… At my age now, I just don’t understand why people wait to start the healing process.”
Erika’s mother believes her OCD has made her a stronger person, Erika says, because her treatments have forced her to face her fears, to conquer them instead of running away from them.
“The more you face it, the more it diminishes,” Erika says of anxiety and OCD. “The more you avoid it, the more powerful it gets. So it makes you a stronger person, because you don’t let it have power over you.”
When she does find herself feeling anxious, Erika spends time outdoors, which calms her. She also finds that walking or other forms of exercise help, as does time with friends or, if things have been hectic, quiet time alone.
“It’s just something you deal with,” she says. “You learn to handle it, and you learn to manage it, and to live successfully and happily with it. I’ve had OCD since I was little, since before I even knew what it was… It’s one of the challenges you learn to live with.”
Erika has been a resident of Detroit Lakes since 1990, after spending her childhood summers here at her family’s lake cottage. She went to college in Arizona, Duluth and Moorhead before returning to town and co-running Lakeside Tavern for about 15 years. She started her own video company in 2008, called South Shore Productions, for which she travels internationally to make short environmental documentaries, public service announcements and commercials for organizations including National Geographic and Royal Caribbean. She still runs that company today, and also joined up with Leighton Broadcasting in 2016.
MORE ABOUT OCD
What is it?
A long-lasting mental health disorder in which a person has uncontrollable, recurring thoughts (obsessions), and behaviors (compulsions) that he or she feels the urge to repeat over and over in response to those obsessive thoughts. The obsessions create feelings of anxiety, or intense distress, and the compulsions are an attempt to decrease that distress. In order for a diagnosis of OCD to be made, the cycle of obsessions and compulsions must be so extreme that it consumes a lot of time and gets in the way of life.
“It creates a (high) level of distress and it impairs function,” explains Dr. Samantha Beauchman, a psychologist at Sanford Health, in the “Inside Out” video about OCD. “True OCD will create a lot of anxiety. (It will be) very distressing for someone who can’t engage in that compulsion or mental activity that alleviates the anxiety. So they may struggle to go on through their day, might have a full-blown panic attack…”
How common is it?
It affects about 2% of the adult population in the U.S., and can also affect children and adolescents. Most people are diagnosed before turning 20, though onset after age 35 does happen. There’s a higher prevalence of the disorder in women than men.
What are the signs and symptoms?
People with OCD may have symptoms of obsessions, compulsions, or both. They generally know their thoughts or behaviors are excessive or irrational, but can’t control them. They typically spend at least one hour a day on those thoughts or behaviors. Some individuals with OCD also have a tic disorder, such as eye blinking, shoulder shrugging or vocal tics like repetitive throat clearing or sniffing. Symptoms may come and go, ease over time, or worsen.
Common obsessions include: fear of germs; fear of losing control; fear of being responsible for something bad happening, like a fire or burglary, or fear of harming others because of not being careful enough; concern about evenness or exactness; fear of losing or forgetting things; concern about offending God or excessive concern about right and wrong; unwanted sexual thoughts; and others.
Compulsions include: excessive cleaning and/or handwashing; ordering and arranging things in a particular, precise way; compulsive counting; repeatedly checking on things, such as checking to see if the door is locked or the oven is off; excessive praying; repeating body movements, such as tapping or blinking; repeating routine activities, such as going in and out of doors, sometimes a specific number of times every time; and others.
What causes it?
Research suggests that differences in the brain and genes of those affected may play a role. OCD does run in families, but genes appear to be only partly responsible for causing the disorder. No one really knows what other factors might be involved.
Can it be treated?
“OCD is a very treatable disorder,” says Beauchman in the video. “It has a high success rate of treatment and treatment sustaining itself over a period of time... So there’s a lot of hope with this disorder, and a lot of success.”
Treatment typically involves a mix of therapy (usually a type of Cognitive Behavior Therapy) and medication.
*Compiled from the “Inside Out” video on OCD, the National Institute of Mental Health, and the International OCD Foundation
WHAT TO SAY - AND NOT SAY - TO SOMEONE WITH OCDDO talk to them about it, in a supportive and understanding way. Encourage them to get help, if they haven’t already. Erika says it’s helpful when her friends notice she’s struggling and remind her of the tools she has to help control her symptoms. She appreciates it when people ask her if she’s okay, or if she needs space or wants to talk about it.
“It’s okay to talk about it,” she says. “As long as you talk with kindness, you don’t have to worry that what you say is right or wrong. People tend to be afraid of what to say… Just say whatever comes to you that feels good at the time, that feels kind.”
DON’T demean or taunt people with OCD, or make jokes about their symptoms. Don’t diminish their experience by trying to equivocate your occasional, mildly OCD-like behaviors with their experience.
“It’s derogatory when people joke about being OCD when they’re not,” says Erika.
For people who are diagnosed with OCD, the anxiety can be severe and their fears “are a real threat to them,” says Beauchman. “Even though it might not make sense to you, might not sound reasonable, or might seem silly, in a way, it’s very important to be very understanding for this person that is struggling with the disorder. It’s very real to them.”
MORE ABOUT THE 'INSIDE OUT' CAMPAIGN"Inside Out: A Step Inside Mental Illness" has been a Detroit Lakes area project to raise awareness of mental illness and erase the stigmas surrounding it. A community partnership between local media and regional healthcare and crisis organizations, the campaign consisted of a series of online videos, newspaper articles and radio discussions that shed light on some common mental health disorders, putting local faces to those disorders. Topics covered include depression, PTSD, anxiety, ADHD, suicide and others.
Videos have been released once a week for eight weeks (the campaign started the week of Feb. 25), and are available to watch free on Becker County Energize's website, beckercountyenergize.com. There has also been a program each week on lakestv3.com. Newspaper articles have been published in the Wednesday print editions of the Detroit Lakes Tribune over the same time span, as well as on the newspaper's website, www.dl-online.com. Participating radio stations included Leighton Broadcasting's local stations, Wave 104.1 FM, KDLM 1340 AM and 93.1 FM, and KRCQ 102.3 FM.