Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
For our December newsletter, journalist Karina Sturm interviewed Anoushé Husain. Husain is a civil servant and paraclimber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour, as a female climber with only one hand. She was born with half an arm, has beaten cancer, and was diagnosed with Ehlers-Danlos Syndrome (EDS). Husain is an ambassador for Ehlers-Danlos Support UK and lives by the motto, “believe in your impossible.” In this interview, Husain candidly shares her journey from being born with half a right arm, through cancer diagnosis and treatment, to her unique challenges in obtaining an EDS diagnosis. She also discusses her love of sports and how she’s been able to overcome all her health challenges to professionally compete.
Welcome, Anoushe. I am so glad we finally got to meet! Can you tell me when you developed the first symptoms of EDS and when you were diagnosed?
Once I actually had the EDS diagnosis, I looked back and realized it was ever since I was a baby. I was chronically constipated as a baby; I had food issues, digestion issues, balance issues and had to do physical therapy. Yet, because I was missing my right arm below the elbow, the assumption was that my balance issues were linked to my missing right arm, and not the EDS. There was always a tangible reason for what was going on, and therefore, nobody looked past it and realized that there was more happening to my body. I was always bendy, but bendy didn’t become a problem until I became hypermobile and started subluxating my joints. I could subluxate my right shoulder for fun; I thought it was a party trick and was really cool. I was still doing martial arts at the time, so I was quite strong. But then I was told to stop, even though nobody knew I had EDS at that time.
My back disc started slipping, so I needed surgery. Then I developed cancer a year later. I ended up with 30 degree burns after radiotherapy on my last day, and everybody was really surprised because I had no pain. I was just really itchy. I remember this well because that morning I showered, and my skin came off and I was in no pain at all.
In 2013, I moved to London for work. Since I have prosthetics, I got referred to a prosthetic hospital, which happened to have one of the main EDS specialists in London. The prosthetics units looked at me and went, “Oh, you’re definitely hypermobile.” So, they referred me to physical therapy, who then sent me to the EDS specialist. I literally walked in, and she just said, “You have EDS!” Just from the way I was walking. I had a ‘duck walk’ according to her.
It sounds like you had an even harder time to get a correct diagnosis because people just blamed your cancer for all your EDS symptoms. That must have been really tough?
It’s a double-edged sword. With any health system, I think doctors really struggle with intangible conditions. Chronic pain conditions and EDS are very hard to measure, and they’re highly variable. They’re individual in terms of how they manifest and how they worsen or get better. Each person is so unique and, therefore, it’s very hard to establish a standardized protocol. Because of that, research isn’t happening as much, and drugs aren’t being developed, etc.
Something tangible like cancer, where cells will visually start mutating and multiplying, and there’s often either an environmental or a genetic reason behind it, is more tangible and measurable. Since I have so many tangible problems in my body, doctors will investigate those because they’re not viewing my symptoms as an ‘EDS issue.’ I’ve had a blood clot, congenital malformations and degenerative disc disease that was visible along my spine, that EDS alone couldn’t explain. I’ve had cancer, which means anytime I get a funky pain somewhere that isn’t explained, and there’s a lump, it’s going to get fixed. So, in that sense, I’m very fortunate that having so many tangible problems means some of the EDS issues are also being discovered.
What is unfortunate is that some of the EDS stuff, which is traditionally EDS, such as the bladder issues, the slow bowel, and some of the other problems,they often refuse to say it is due to EDS. Then it’s very hard to find a solution to those problems.
How did you cope with all the challenges, especially growing up? What are some of your coping strategies?
I have to say, I wasn’t coping. I was very whiny, and I was feeling very sad for myself. I lost the love of my life, which was martial arts. I saw all of my friends going to university, having healthy lives while I’d always been the one who had hospital time off in school, was always off sick and the “weaker” one. I felt like it was really unfair, especially because back then, before the EDS diagnosis, I was fighting an unknown enemy. So, I was blaming my body for not being able to beat this unknown thing. I was really angry.
Once the cancer happened and I started going through treatment, my own perception of myself changed. When you’re not in the cancer community, the inauguration of jumping into that world is very quick, it’s very sudden and it’s very traumatic. Ultimately, I felt that the cancer was like an emergency call for help for my body. It wasn’t that my body was failing; it’s that I wasn’t listening to it. I wasn’t doing enough. I realized everything was really shit, but this was my life. I’ve got to decide what I can do with it. And I think that’s where my psyche started changing from ‘letting it all happen to me’ to ‘getting up and doing something about it.’ I switched the tables around.
It’s one of my main mantras: believing your impossible. Because inevitably I’ve ended up doing things that shouldn’t be possible. If you looked at me on paper and gave it to a random person, they would say, “Oh my God, how are they still functioning?” I’m doing things that, in terms of society, shouldn’t be possible, right? I am accepting that I’ve been dealt a heck of a deck of cards. They sometimes aren’t the best, but I can’t change the cards I’ve been given. What I can change is what I do with them. And I think that’s basically it. So now, whenever a health issue happens I allow the shock to settle in. I allow myself to grieve because I am probably facing yet another change to what my normal is. Then I say, “These are my cards. What am I going to do with them? What next?” And that’s my coping strategy.
That’s a good strategy. I think going through the grieving process is basically how you end up with acceptance. Then you can move on and figure out solutions or adapt to whatever challenges you have.
An interesting thought somebody gave me is that, “When you’re angry, it’s because you’re hurt, and if you’re hurt, it’s because you’ve loved.” It’s taking time to grieve and understand that ultimately love is on the other side. Love for myself, love for what I’ve done, for my husband, the people in my family, friends, and the things I choose to do. So, anger and change, ultimately, is an expression of hurt and love. But you’ve got to unpack it. Unfortunately, that takes a brave journey.
So, tell me a little bit about all of the sports that you’ve done. It sounds like you’ve always been very competitive and an athlete. Where did you start and how did you get into climbing?
It all started being born without my right arm, below the elbow. I was physically active growing up. Part of it was physical independence, part of it was also just natural ways of keeping kids busy. My brother and I were both very active in sports, but I was more driven, I guess. I wanted to be good. I didn’t just want to do sports as a hobby; I wanted to be good at whatever I did. So, I was a competitive swimmer as a child, and then I moved into martial arts. Then, I started competing in dance as a team. I stopped martial arts at 16, because the doctors told me to stop doing impact sports. I had a ten-year drought, where I was trying many different sports to replace martial arts. But I couldn’t find anything that kept me engaged.
I just needed something to keep me moving, to help me to forget my health issues because activity changes your focus; it’s so mindful and meditative. And then I got cancer, and one of the big issues with cancer is that my left arm was impacted. I struggled with grip, raising it above my shoulder, repetitive movements for things like drying my hair, washing my hair, putting clothes in the cupboard, throwing a pot in the kitchen; all of those were difficult. They created constant fatigue and chronic pain.
One of my best friends suggested I needed to do something to strengthen my left arm. She said, “You’ve tried tons and tons of sports. Why don’t you try climbing?” We went together on a school trip to climb, and it was great. I told my parents I really wanted to do it, but that was 15 years ago – and when I was a hell of a lot healthier. I’d been sedentary for years. My body shape has changed and I’m not particularly happy with it. I had massive body image issues and listed all of the excuses under the sun, as to why I couldn’t climb.
My friend just said “Right. You’re making excuses because you’re scared. What’s the worst that can happen? The worst is you find another sport you don’t like. The best is you find something that changes your life.” I couldn’t argue against that if I wanted to. That was a mic drop moment. So, I went climbing. Everything hurt. But that effort of thinking and coordinating my body, balancing and appropriation, including the holes that I could touch, was such a holy sensory experience that I forgot I was ill. I was just a climber trying to decline. That’s all I was. And that’s the feeling that makes me come back all the time. I’m not ill when I’m on the wall; I’m just a climber.
Then, when I moved to London, for the first two years, I didn’t know anybody to climb with. I didn’t know there were climbing walls. I didn’t know climbing was a thing in the UK. I moved in with an old flat mate in 2015, and my flat mate had heard about this great climbing center in London l. She really wanted to go but didn’t know how to do her knots. I said, “Well, I just learned how to do my knots, like, four weeks ago. I can totally take you.” The idea was that we go, be bad at it together and just have some fun. Then, I found out that there was a competition. I hadn’t competed in anything in ten plus years. It was an all levels, all abilities, competition. So, I could have literally gone, having only climbed for three weeks. But that’s not who I am; I am somebody who has always trained for a competition.
I got a coach in September 2016, and I started competing in December 2016. That is when I got my first ranking in the UK. I started ranking second in the UK, in my category. At the beginning, I was so tired that I couldn’t walk from the tube station to the climbing center, which is only a nine-minute walk. It was so tiring that I would then not do my warmups. That’s the level of fitness I was starting with in the beginning. Then, in that year, I got diagnosed with EDS. So, my coach changed how we trained.
Since then, it’s gone from a thing that I used to do with a friend at lunch every couple of months, to something that now dominates my life. I spend hours and hours at the wall. I met my husband at the climbing wall, in a competition. He proposed at a competition. I had to climb to get my engagement ring. I’m sitting in my office with a climbing wall right next to me, with kilos of weights and all sorts of other gizmos sitting in there, because it’s both our office and our training room. It’s crazy how life changed with climbing.
You said that you started by being too weak to walk to the climbing studio. How did you adapt, or how did your trainer adapt, to the additional challenges you have because of EDS?
The good thing about my climbing center is the inclusive coaches. I don’t think my coach was expecting to face as many issues as he did when he trained me, but he just adapted. He did so much research to work out why I couldn’t do certain things, how to help me sleep better and what I could eat to improve. Some things would work, and some of them wouldn’t. I was chronically injured. I’m still chronically injured. The injuries are part of the game. I think there was just a lot of care and a lot of love from both of my coaches.
In late 2019, I started training for a Guinness World Record. But in 2020, the lockdown hit, and I caught COVID. They thought I had a cancer relapse which had spread to my lungs. At one point we were asking, “Am I going to be dead in a few months?” Because if it was a cancer rebound, it was going to be a bad one. That wasn’t a great year. When I got back to climbing later that year, I became an ambulatory wheelchair user. I could get out of my chair, but I couldn’t stand for very long. I could only walk around my flat by using the walls and other supports. That’s how bad things had gotten. My first time back to the climbing wall, I was being hoisted onto it because I couldn’t physically go up myself.
Are you ever worried that you will get hurt so badly that you would have to give up climbing and then reinvent yourself again?
I think climbing is such an adaptive sport that, regardless of how I feel, I’ll never get to the point of having to stop climbing. If anything stopped me, it would be outside health issues. It’s getting harder and harder to maintain my climbing levels for various health reasons. And there will probably be a grieving process associated with that, but I don’t think that I will ever stop. I might just move back into the hobby stage. It’s so good for me, why would I stop?
Tell me a little bit about the Guinness Book of World Records experience. Was this your biggest accomplishment so far? If not, what was your biggest accomplishment?
I would say my biggest accomplishment is the fact that I did a six-day climb. For me, that meant I went from a novice climber to an advanced climber. I was pleased about that. It’s a rite of passage as a climber.
The Guinness World Record (GWR) was insanity. Climbers don’t climb with repetitive movements or with the frequency that I had to climb for the world record. We certainly don’t train for the GWR because it can injure us; especially doing it one-handed. I wasn’t allowed to use my little arm, even though my little arm is much stronger than my big arm.
I then needed major surgery in January 2021, so there was almost no point trying to train for a climbing competition. I wasn’t fit enough to train. Even if I did, I was going to lose it all with my abdominal surgery. It was only in August last year that I felt energetic enough to give climbing a try again. Guinness training was so hard and so different to normal training that it was mutually exclusive with competition training. At the time, I had just been to Luxembourg, so I was in a dual national position. Luxembourg had launched their power climbing team and I was in with their very first members. I had to train because I was going to my first world cup.
I had to make the decision to stop Guinness training for a bit. So, for two weeks I trained for Guinness and just wanted to get it done, regardless of how well it went. When we got to the climbing wall on April 5th, it was weird. My coaches both said I looked different that day. I said, “I know you guys are all happy I’m here, but I can’t be happy until this is done. I’ve now got to get the job finished.”
Then the hard work started. They said I looked extremely calm. I said, “it’s because I’m extremely focused right now. I’m in it to get it done. Now this is my moment.” So, I got on the climbing wall where the targets were 200 meters, which meant 28 climbs of the wall I was on. I ended up doing 51 climbs. This ended up being 374 meters, 85 CM (because every centimeter counts). It was insane. In all my practice runs, I’ve taken at least a five-minute break at the 20-minute mark. But with this one, I took a 1 minute break at 33 minutes and that was it. That was my only break for the whole hour.
Adrenaline was clearly on my side. I managed to keep everything going, but around run 42, my skin started bleeding. So, I started tearing off each finger, individually. Every run I’d go up, another finger would go. At one point I asked the duty manager, my friend Dan, “Do you mind if I bleed on your climbing wall?” The taping wasn’t compensating, it was coming off because I was bleeding. It was getting really painful. My heart rate was 195 on average for that hour. Doctors would not recommend this, but I did it. You just focus so hard on that one thing, it is you against yourself; it is your own headspace.
If you do something like that, what’s the consequence after? How does your EDS agree with pushing yourself so hard for this competition?
I had to go to the office the day after the GWR assembly and I was giving interviews. The panel members were like, “What have you done to your hand?” I said I just had a really hard climbing session yesterday. Now, normally in the office I’m able to walk from my desk to the toilet and back to my desk again. I couldn’t do it that day. I absolutely needed my chair for everything. I couldn’t physically walk the next day. And then I had another flare.
You started to use your sports accomplishments and EDS journey to raise awareness for lots of different things. Can you tell me why you felt it was important to share your story?
For me, sharing my story meant I felt less isolated. One of the things I found was that so many people haven’t shared their stories and they were feeling the same isolation that I was feeling. So, I then figured, what if this repeats itself across everything I’m experiencing? EDS, the limb difference… and it was.
The reason people are feeling isolated is that we’re not having these conversations because we’re worried about the stigma that happens as a consequence. Screw the stigma. I’m going to get out there and start having conversations. I’m going to share my journey, the good and the bad. And hopefully somebody will read it and will feel less alone and less isolated.
What’s the number one takeaway you want your followers to understand from your advocacy and accomplishments?
Believe in your impossible.
People need to learn to believe in the impossible. If they have a self-limiting belief, understand where that’s coming from. Is it coming from something they’ve heard, their upbringing, what society believes, or is it genuinely something that they need to work on?
Great, thank you so much for your time, Anoushé! I wish you all the best for whatever competition or challenge you take on next.
You can find out more about Anoushé Husain on her website:
All images: Rebecca Westcott
By Susan Jackson and Karina Sturm