Just a few years ago, Amy Pohl loathed her left hand. “Despised it,” she says. It had become a sort of shape-shifter that was part of her and not part of her. It would swell up, change colour. She could not touch it, could not move it. Even the sensation of air upon it was excruciating, so that for months, going outside or even opening a window became impossible. “I felt that it didn’t belong to me, and it wasn’t mine. I had a real hatred towards it.”
Now 30, Pohl is still working out how to survive what has happened to her body. She has not, she acknowledges, had to withstand something as drastic as a shark attack or a plane crash. But neither has she found any sort of cure.
“It’s a different way of surviving. Er, ‘I got up this morning’?” she says, laughing. But every day presents a different challenge. Today, for instance, she cannot raise her arms. And after several years, her medical team is still trying to understand why, as she puts it, her legs “don’t work”.
In autumn 2017, Pohl, a teacher at Rugby Free primary school in Warwickshire, had been feeling run down. Her sore throat was diagnosed as adult croup and she was treated at University Hospital Coventry. While there, she had an allergic reaction to an anaesthetising spray and was rushed into ICU. Not long after her admission, Pohl says, a doctor failed to insert her cannula correctly, and used the same needle again on the second try. “The chance of someone getting an infection if a needle is reused in their own body is really slim,” she says. “It happens to be that I was that one in a million.”
Pohl’s hand and wrist swelled. She did not know it at the time, but she was experiencing the onset of complex regional pain syndrome (CRPS), a poorly understood neurological condition that is thought to result from the body reacting abnormally to an injury. Hers is a complex health picture because she also has Ehlers-Danlos syndrome, a genetic condition that, in childhood, made her flexible but, when she was confined to bed, caused her joints to “slip out”. It was CRPS, though, that threw her. Turning to Google to find out about it, she was shocked to learn that it was often described as “the suicide disease”.
She would soon realise why. “There is a scale that says it is the most painful condition you can have,” she says. “Higher than childbirth. Higher than amputation of a digit without anaesthetic.”
Pain came to Pohl in many forms. “It felt like my bones were going through a meat grinder. And I had ants that had been set on fire, with knives for legs, pulling on my arm.” When the pain was most intense, she had to take 12 oral doses of morphine a day. “I was begging every minute of my day for someone to cut my arm off.” Many days, she says, “I thought about doing it to myself.”
It was so bad that the thought of taking cutting equipment to her own arm does not appear to horrify her even now. But “if you amputate the limb that has CRPS, there is a big chance of it spreading. Also you are going to get phantom limb pain,” she says.
Pohl has since been diagnosed with PTSD. I ask her how she feels about the label “suicide disease”, and whether it is another brutality she has had to learn to live with. “I don’t think it’s a nice way of describing it,” she says. “I was already in a lot of pain, and in some ways, [reading that] kind of put ideas into my head.” In the spring of 2018, on a rare break from hospital, “I did try to take my own life,” Pohl says. “I had no idea what my future was going to be. So I just decided I didn’t have a future.”
Pohl was then moved to a psychiatric ward, where she thinks she spent around four months – she can’t be sure because she has “blurred a lot of it out. They kind of just left us all to ourselves, sadly,” she says. “So we all became each other’s therapists. We had this table in there, and we would all sit and draw together.” Many patients have remained friends. “It wasn’t the best place to recover, but we made it work together.”
At some point during her stay, Pohl realised that she held herself responsible for her illness. “In the early days, I blamed myself a lot for not speaking up,” she says – about the reused needle, about feeling ill in the first place. “But I was very unwell.” With a care worker, she came up with the phrase “to stop fighting myself and start fighting for myself”.
On the most painful days, Pohl repeated those words over and over. “I don’t know if you’d call it a motto or a mantra. Some days I probably said it to myself a thousand times. I was hanging on to the words with my life.”
Now the phrase is so embedded in Pohl’s thinking that “I may not say those exact words, but I’m thinking in those words,” she says. She has tried many therapies since the onset of her illness, from heat for her hand, to eye movement desensitisation and reprocessing to manage her trauma. “I went through a time when I was like, ‘Yeah, I’ll try that – it will work! It did not work.” These days, she has incorporated her mantra into her talking therapy, which helps her to focus on positivity.
“Why sit in a bed crying, ‘Why me? Why didn’t I stop this? It’s all my fault!’ when you could be getting out of bed and living your life, even though it’s not the life you always planned you were going to have?” she says. “You still have a life. And maybe someone else doesn’t. So value what you do have.”
When the first lockdown started in March 2020, she was moved to a rehabilitation centre in County Durham, more than a three-hour drive from family and friends. “I was on a two-week quarantine. I couldn’t leave the room.” It was one of the loneliest periods of her life.
She had recently installed TikTok on her phone, and aimlessly scrolled videos. Wouldn’t it be fun, she thought, to make one herself, and share it with her family? At least they would see that she was OK. She filmed herself messing around, lip-syncing to one of the TikTok sounds, and uploaded it. She had assumed her settings were private, and was surprised when the video started to attract views.
“I thought, ‘Oh, that’s all right – this is a worldwide app. I’ll never meet any of them.’ So I shared more. Then people started asking questions, like, ‘Why is your hand like that?’ So I started answering. It kind of made me feel empowered and supported and listened to. So I started changing the angle of my videos to help other people as well.”
As a content creator, her job is to “make videos to help people and make them laugh”. On YouTube, Instagram and above all TikTok, she has filmed herself having wax therapy on her hand (in which she dips her hand repeatedly into a pot of hot liquid wax which hardens in layers, keeping the joint warm), applying the same to her dad, hanging out with her care worker “Bob” (real name Denise), getting stuck in the wet room of her new home, and giving her mum a same-height hug with the help of a hoist.
Much of this Pohl does with a smile on her face, but her videos are confiding as well as comical. In one, she confronts the commenters who complain that she’s taking a wheelchair from someone else who needs it. In others, she takes issue with a branch of Claire’s accessories for being inaccessible to wheelchair users, and with H&M for charging customers for returning clothing (the company has since changed its policy).
For several years, Pohl assumed that she would recover from CRPS and return to her old life. “I thought, one day I’ll wake up and everything will be better. Unfortunately,” she says, “that day never came.” With no end in sight to her hospitalisation, and still on the school’s staff, she was persuaded to retire.
Since then, she has worked with her chronic illness to build a different life. She has bought herself her own bungalow, in County Durham – it felt too traumatic to stay in the catchment area of the hospital where she was first treated – and she hopes to move in by Christmas. “I’ve come to a point in my recovery or treatment – whatever you call it – where rehab isn’t going to make me any more independent than living in a house could do,” she says.
She has used many techniques to help herself to cope – “all the traditional ones that you hear about: the breathing, the counting, the five senses”. Distractions help, from Netflix to “going for a roll”, sometimes on the local beach with the help of Beach Access North East, a charity she works with. And when something bad happens, she reminds herself to “think of a more positive thing that’s going on right now. Because you can always find something positive.”
Above all, she says, “I think it’s always been a secret therapy for me to make videos and to talk things through. When I’m struggling, I make a video about it.” Pohl had learned to edit video during a trip to Estonia, during the third year of her teaching degree at the university of Winchester. “I paid all that money for the degree,” she says. Most of it feels worthless now. But those two weeks in Estonia are a different matter. “I use them every day.” Sometimes, rewatching her old videos gives her a chance to track her progress. She now has 3.6 million followers.
“I’m a different person now. And that’s in a good way. And also in a bad way,” she says. “My whole outlook on life is very different. I value things that I maybe took for granted. I’m still Amy. Just – in a different way.”
Pohl takes less medication now, and feels less pain. She is unsure whether this means that her illness causes her less pain, or whether she has simply got better at handling it. The problem with pain, she says, is that you can never walk away from it. “It will follow you, wherever you go. I had to accept that it was there, [although] there is always hope, and things can get better. I learned ways to live with it, and to cope.
“And it has got better for me. If I’d seen a person like myself, or read my story, five or six years ago, I think things would have worked out very differently in those first few years. Because I would have seen, you can live your life.”
Of course, she must still navigate the uncertainty about her condition. For a long time, “I was like, I just want a name, to know what it is. To know what I am fighting.” But now, she says, she chooses not to “question every single day what’s going on, getting into this deep, dark pit that I was in four or five years ago. I just want to live my life.”
• In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email email@example.com or firstname.lastname@example.org. In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org. CRPS UK supports people with complex regional pain syndrome.
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