Mind-Body Medicine Heals Rebecca Tolin’s Chronic Fatigue Syndrome

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When Rebecca Tolin was 34 her energy tanked. She struggled to get through the work day and could no longer exercise. She was tired all the time and no amount of sleep rejuvenated her. Then, she caught a series of viruses and her system crashed.

REBECCA: I suddenly had insomnia, which I had never had. I had always been a really deep sleeper. There was a lot of brain fog, so it just felt like words and names were floating through my mind, but I couldn't access them. I couldn't even remember the name of close friends or colleagues. It was really scary.

And when she did sleep she struggled to get out of bed the next day. It took all of her energy just to take a shower. And the list of symptoms began to grow.

REBECCA:  I started getting hot flashes. I had lots of body aches, pains, trouble, digesting food, this whole constellation of symptoms.

It started to affect her life. She felt like she was moving in slow motion, couldn’t perform her job or go out with friends.

She went to her doctor, and they didn’t know what to make of it. So she got second, third and fourth opinions… But nobody really knew how to fix it or what was the root cause of it. She felt broken.

This is 2 Lives. I’m Laurel Morales.

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Rebecca could remember the before times, when her body seemed to work for her, instead of against her. 

In college she knew she wanted to be a broadcast journalist, so right after graduation Rebecca took off on a road trip around the country.

REBECCA: I went to tiny little news markets, places like Beaumont, Texas, or Shreveport, Louisiana, and just knocked on the doors of these news directors. I was so driven. I just had a fire in my belly.

She finally landed a job in Bend, Oregon.

REBECCA: I was running my own teleprompter, jump over to the weather screen and deliver the weather. And I loved it. <laugh> I was really terrified that I was solely responsible for this newscast, but I just had such a sense of accomplishment.

As she got more experience she applied to work in bigger markets and eventually landed a job with the PBS station in San Diego, her hometown. 

In 2004 she met a man through the station. He was complimentary and charming. They went out on a few dates but he lived in a different city. They discovered they both planned to be in Japan at the same time and would meet up.

REBECCA: I had always wanted to go to Asia and he was going to be there. So I went to meet this person, and I did some traveling from Tokyo to Kyoto and some areas outside of the main city. 

They did some sightseeing apart and some together. On the night before she was scheduled to fly home, they went out to dinner. Rebecca noticed he was drinking more than usual and became belligerent. 

REBECCA: He called me, um, a stupid Jewish woman and said, my people are destroying his career prospects. He worked in, in Hollywood and apparently had a lot of antisemitic views that I wasn't aware of previously… it did feel like a, a religious attack that he had had some pent up aggression, um, against Jewish people. He started saying that they had taken money or, or won grants that he had applied for. And so it didn't feel like, so such a personal argument as just a, an attack.

She left the restaurant sobbing and got herself a cab back to the hotel. Before she could pack her suitcase, he knocked on the hotel door and demanded she let him in to talk. Desperate to make sense of it all, she unlocked the dead bolt. That’s when he stormed into the room and forced her onto the bed. She tried to get away but her attempts felt futile. He was bigger and stronger than Rebecca.

REBECCA: … And he sexually assaulted me. And I really just sort of, um, blacked out a bit after that experience. I was in a state of shock.

By the time he left her room Rebecca needed to get to the airport to catch her flight back to San Diego.

REBECCA: But as I was boarding the plane, I came down with a urinary tract infection, which is really painful and especially on a long flight on a long flight. And I actually begged to get off the plane before they left, but they had already had my luggage and everything. So I endured that flight. I was in agonizing pain. And then when I got back to San Diego, I was just, I felt like I was walking through quicksand.

After three days of sleeping and resting and not being able to do much of anything, she forced herself to go back to work. Initially she kept hitting snooze on her alarm clock. She would drag herself through her day, no energy to meet friends for dinner or go for a jog on the beach, she’d collapse in bed early.  

REBECCA: But I just felt really tired for about a year. I went to a few different doctors and they couldn't find anything wrong with me…It looked like I was okay, but for about a year, I really wasn't okay. I felt very unsettled inside. There was a lot of confusion and I just had this nagging fatigue.

Months passed and still she told no one about the attack in Japan. And she hadn’t connected the trauma to her physical symptoms. 

REBECCA: I just couldn't seem to look at it. I knew it had happened, but I couldn't, I couldn't go there in my mind. Um, or even in my emotions, it felt like I was just sort of frozen and was just barely functioning in my life. I was still at that point able to work full time, but there was just not, um, a real sense of aliveness anymore or emotional availability.

She tried to keep up with her routine but she was barely hanging on at work. At 34 she wanted to meet her life partner so she was still trying to get back into the dating scene. But that was exhausting as well.

Everything crescendoed after she was on a long flight home from a vacation. On the plane to San Diego she caught a cold. After a few weeks of battling this cold on and off, her whole system crashed.

REBECCA: Everything went haywire. I felt like I had the flu 24-7. It was like a flu that never ended. Hmm. There was such deep exhaustion that it was really hard just to walk from the bathroom to the bedroom… I felt like I had dementia overnight and I was, I was in my thirties.

The symptoms piled up – body aches, trouble remembering or concentrating, headaches. When she tried to sleep longer it only made her feel worse. She’d never experienced anything like it.

Her doctor told her it could be any number of things but it was probably something called Myalgic encephalomyelitis (en-sef-uh-low-MY-uh-LI-tus)/Chronic Fatigue Syndrome, or ME/CFS, a complicated disorder characterized by extreme fatigue that lasts at least six months and can’t be fully explained by any underlying medical conditions. 

She went home and googled it and fell down a rabbit hole all night of what her life might look like now. She made appointments with other doctors.

REBECCA: I was literally terrified I just was so scared. I would just tremble with fear. I had no idea what was going on with me and doctors seemed confused too. They really could only diagnose it as chronic fatigue syndrome. The, they would give me other diagnosis, like, um, premature, ovarian failure, um, premature menopause, fibromyalgia postviral syndrome was a common one Epstein bar syndrome, but no one was really explaining why was happening or how to get better. 

Her inner voice was drowned out by allopathic doctors, eastern practitioners, naturopaths…She listened to them and tried all sorts of remedies. One doctor told her viruses were suppressing her immune system. Another said Epstein-Barr had gotten into her brain. 

REBECCA: I tried antiviral medications, even in an intravenous form… that actually made it worse. After that IV, my system just really crashed and I ended up back in bed for a few months. I tried some other medications for sleep, some anti-anxiety medications. There was a lot of supplements and herbs. I went to really everything from energy healers to neurologists and rheumatologists.  

One pipe-smoking healer charged her $200 to talk about her cat. 

REBECCA: I was on this cache of about 30 to 40 supplements every day. I had like all my little pill baggies and my life just kind of revolved around this. There was also a lot of restrictive diets. They thought that gluten and sugar and dairy and things like that would make symptoms worse. 

She was so sick she got laid off from her job. She was devastated to leave a career she loved, and terrified about how she would support herself financially as a single woman. Her state disability ran out after a year. 

The fear and worry only made her symptoms worse. She couldn’t even drive herself to doctors appointments. 

REBECCA: So my mom was taking me to all these different doctors because I really couldn't drive very well. There was a sense of, of dizziness and lightheadedness when I would stand up. And I had found an expert in chronic fatigue syndrome who was a naturopath after already going to a number of allopathic doctors. And I had so much hope in this naturopath. And I remember being in his office and him directly saying to me, we don't know the cause or cure for this. And some people never get better. And you'll just have to accept that this may be the reality for you. PAUSE And I felt like the room was spinning. Everything got dizzy and, I felt very dizzy and lightheaded and just not really, even in my body, I kind of like I almost left, left the body and was, was looking at it from the outside. I just felt really empty, like a shell of a person.

Whatever energy Rebecca had left she used researching her illness, fighting health insurance denials, and trying to save her house from foreclosure. Her family helped with the mortgage payments, she took out another loan, then when her dad died she moved in with her mom and rented out her house. 

Finally after six years of attempting to treat her symptoms, she listened to a thought that kept nagging at her. After years of keeping the assault buried she thought maybe it would help her to talk about the rape. So she made an appointment with a trauma therapist.

REBECCA: I started talking to her about what had happened with the trauma. And I think it was really helpful just to be able to articulate it to one in a safe space and really be heard.

While it shifted something emotionally to talk about her attack, her physical symptoms persisted. 

REBECCA: It was such a roller coaster for about 12 years where I would go to about 50 different practitioners in all. And every time there was just this hope, this is gonna be the thing. 

After more than a decade of getting her hopes up only to be let down, she gave up. She stopped trying to fix her body. Instead something inside her told her to just accept her body just as it was. 

So instead of sitting around doctors offices, she meditated, wrote poetry, and read Rumi, Rilke, and Eckart Tolle who said things like, “whatever you fight, you strengthen and what you resist, persists.” 

REBECCA: I would just feel a little bit of relief, not necessarily physically, but emotionally and mentally, everything was calming down.

It was around this time that Rebecca signed up for an online writing class. In the class she met another student named Kathy McKinley who told Rebecca that she had recovered from chronic fatigue syndrome.

REBECCA: And that she had had almost all the same symptoms that I had and that they started after a really stressful event in her life. And what I'd like to hear more about how she recovered. And at that time I was also getting migraines. And so I said, well, I can talk on the phone about 10 minutes at a time before I start getting a headache, but I'd love to do that.

So they set up a time to talk and Kathy told Rebecca about how she dealt with chronic fatigue syndrome. And she asked Rebecca questions about her.

REBECCA:  …and she really listened to me. And honestly, she felt like the first person short of a therapist or two who really listened to my story and, and really understood what was going on. 

Kathy told her about the work of John Sarno, a doctor who practiced at New York University School of Medicine who’d written four books on mind body medicine. Sarno believed that stressful events or repressed emotions could trigger chronic pain, fatigue and other mind-body symptoms. 

KATHY: It tends to be a malfunction or a mixed signal that the brain is sending in order to keep you safe. That’s what the brain is trying to do keep you safe but it is sending the wrong signal because the nervous system has become over activated or overstimulated and is now in fight or flight mode.  

REBECCA: She explained to me that after we experience a lot of stress, we're not able to resolve or trauma that's still in our system. It can really trigger the brain and the nervous system into this continued state of flight or fight. And from that state, the brain is perpetuating certain symptoms through the body, such as exhaustion, the tired and wired feeling, brain fog, all these things that are really preparing us for an emergency to run, to fight, to freeze, but are really challenging when they're prolonged over time. And these symptoms can become chronic, especially when there's a lot of fear and focus on them because the brain actually learns whatever we focus on.

Rebecca learned that her nervous system was still trying to warn her of danger. It had been stuck for the last 13 years in fight flight or freeze mode.

REBECCA: She said, you're not sick. Yes, I believe you. These symptoms are real. They're totally disabling, but it's not that you're sick with this incurable disease, it's that your brain and nervous system still think there's a state of emergency. And I felt like I had heard the only thing that really made sense. PAUSE All the other theories the doctors had told me, they just didn't make sense because when you have certain symptoms that are caused by a pathological issue in the body, like say you break your arm, or there's a tumor in the body, those don't move around and shift and change. And my symptoms always shifted and changed and went up and down. PAUSE So when she explained to me that certain symptoms, we now know through brain scans and other studies, are real physical symptoms in the body, but they're caused by the brain rather than by viruses or some sort of structural issue in the body. It just clicked. 

She told Rebecca your symptoms aren’t a sign something is wrong in your immune system, instead they’re a sign of unresolved trauma. There’s a sense of danger in the body and the brain. And the antidote to that is calming down the fear.

The conversation went on much longer than 10 minutes. It actually lasted three hours.

REBECCA:  And by the end of this three hour conversation, I hung up the phone. I got up and I started running around the block and I had not ran in 13 years. I mean, it was incredible that my body just filled with energy. I could hardly believe it was happening just from this conversation. 

Rebecca learned that reaction, that sudden burst of energy was a spontaneous remission. A taste of what was possible. It was enough to give Rebecca renewed hope. So that’s when Rebecca researched everything she could get her hands on about mind body medicine. And she set about rewiring her brain.

REBECCA: It took many months to recover, many months because it's really a type of, retraining the brain, calming down the nervous system and processing those pent up emotions. But therapy alone wasn't enough because I still thought I was sick and I was still stuck in living like a person who was impaired. And so part of this mind body approach is understanding that the symptoms aren't dangerous. And so starting to challenge the limitations. I started doing more activities, even though they would bring on symptoms.

Rebecca would go on a walk and start feeling increased breathlessness and weakness, so she’d bring an awareness to the sensations … fatigue felt like a heavy cloak dragging her down. She’d ask herself: ‘what am I feeling?’ ‘I’m frustrated.’ Then she’d tell herself, ‘I am safe. I am ok. This is just my brain creating this sensation to keep me safe at home. But I don’t need to be protected anymore. I’m safe now, strong and resilient. I’ve got this.’

Initially those walks or phone conversations would cause her nervous system to rev up. She’d  have insomnia that night, and maybe feel like she had the flu the next day. But the more she practiced calming her fears, retraining her brain that she wasn’t in danger, the better she felt.

REBECCA: I learned that fear was the fuel to the symptoms. So it was a completely new understanding of what was happening to me. And instead of fighting the symptoms, I was just becoming very curious about the symptoms as sensations in the body. And as I would feel the sensations in the body, I would notice that fatigue felt heavy and I would just be present for the heaviness in the body. And often it would shift into an emotion, an underlying emotion like sadness or anger, and then it would sort of dissipate. 

She began to work with someone who specialized in mind body medicine to process the unresolved trauma – the assault over a decade ago. 

He’d ask Rebecca things like what emotions are coming up for you? Where do you feel them in your body? Rebecca began to have a new awareness of her emotions and how they affected her physically.

PLAY EXCERPT FROM REBECCA’S SOMATIC TRACKING MEDITATION 

REBECCA: So it was like taking my agency back. And that was so important because when you experience trauma, you lose your agency. As I sort of acknowledged and honored these different parts of me that I had had to cast aside the ashamed part for being assaulted, the ashamed part of me for not being able to heal, I felt like it was somehow my fault. As I started embracing and accepting these different parts of me and allowing the emotions again, that's where I really felt whole again. And it almost didn't matter what happened with the symptoms. Of course I preferred they went away, but I reclaimed myself. PAUSE 

LAUREL: And you had to learned to be patient with it,

REBECCA: Very patient, patient, very patient. It was not a quick fix. I really worked at it and had to be patient. But at that point it was okay, cuz I had tried so many things over 13 years I had become patient, but since I saw little gains and little improvements, it just bolstered my belief that I'm on the right path.

After 13 years of feeling like she was in a brain fog, not one decent night’s sleep, not being able to work, see friends, go for a walk let alone a jog on the beach, she finally felt like herself again.  

After seven months of actively working to rewire her brain, the symptoms went away and her energy returned. She says she felt like a kid again – elated and free. 

She went on hikes, met up with friends, even planned a trip to Pennsylvania. It would be the first time she’d flown in over a decade

REBECCA: And I was really scared to fly and something that I learned from this mind body approach is that the brain links certain previously neutral stimuli as dangerous if there's been anything stressful around that situation. So my brain was actually really activated around the idea of traveling mm-hmm by the plane. And so I was really scared and I worked with this mind body coach to prepare for that trip, but I felt ready. I felt like I, I have practices. I know how to tune into my body and my breath and tell myself soothing messages and remind myself, this is a different situation. It's a different time. I'm no longer in danger.

Rebecca said some of her old symptoms returned on that trip but with the help of her new tools she rebounded quickly. 

Even though her energy had returned she decided she didn’t have the same passion for journalism. She listened to her inner wisdom that said what she really wanted to do now was to help people like her.

REBECCA: What I was so passionate about and am so passionate about was this mind body healing. And it felt like the next step was to share that with other people. Because I had been to these 50 practitioners and many of them were very well trained, very well intentioned people, and I'm sure they, they do help a lot of people, but they didn't help me. 

So she trained with Dr. Howard Schubiner and a psychologist named Alan Gordon, who together bridge psychology and medicine for chronic pain and fatigue and other symptoms generated by the brain. Her instructors were careful to point out that there are certain illnesses that are degenerative and there may not be a cure for them, but many symptoms are triggered by our nervous system.

And in 2018 she opened her own practice and now works with clients online and teaches a class called “Be Your Own Medicine.” One of the first things she tells people is you’re not broken. There’s a part inside of us that’s always whole.

REBECCA:  If somebody says you can never feel well again, just realize they, they can't help you. They don't have the answers for you. Really find your own intuition and what resonates with you. Everybody has a bit of a different path and whatever got us into the symptoms will help get us out of the symptoms. So in my case, it was really feeling like I'd lost my voice, my power, my agency, and those feelings were intensified in the medical system. And so I had to sort of find my own agency again, and for me to learn this body of knowledge and to work with my thoughts and my emotions felt very empowering.

This is 2 Lives. I’m Laurel Morales.

2 Lives is written and hosted by Laurel Morales, story edited by Camila Kerwin of the Rough Cut Collective. Halle Hewitt is our new production assistant. Annie Gerway is our illustrator and web designer. Music from Blue Dot Sessions.