Ellen Noble: Living and riding with Hashimoto’s

August 19, 2020 by badassery No Commentsfitness

Ellen Noble: Living and riding with Hashimoto’s

© Chris Milliman/Red Bull

If you’re a mountain bike or cyclocross fan, you’ll know Ellen Noble. The talented American CX pro is known not only for her technical skills, such as being able to ‘bunny-hop’ cyclocross barriers (lifting the front and then back wheel to allow you to ‘hop’ over obstacles), but for being an equality advocate and supporter of aspiring young riders. However, behind the scenes, Ellen, whose career has seen a staggering 21 UCI podiums and multiple national titles, has spent the last two years battling an invisible illness behind the scenes.

As the 24-year-old revealed in an Instagram post earlier this year, in 2018, after she’d enjoyed a successful start to the race season, ‘the lights went out’ on her health and she spent the next two years searching for answers. Eventually, Ellen was diagnosed as having Hashimoto’s, an incurable autoimmune disease related to thyroid function, which has turned her life and racing career on its head. Very kindly, Ellen agreed to chat about her experience in this Q&A, along with her future plans for her coveted Quest cyclocross camp for young women, and what’s making her smile right now (spoiler: it’s dogs).

Rewinding to 2018, you had a pretty stellar start to the season. But then, as you put it, ‘the lights went out’. Can you share what happened and how you felt physically during this time?
It’s really interesting thinking back to 2018 because I had such a great start to the year. It was so exciting because it finally felt like I had put it all together. [Then] in November of 2018 – literally in one week – it felt like everything changed. It was pretty devastating because I really felt like things were going in the direction I’d always dreamt of them going and I had really good momentum towards the Olympics, at least in my own mind and with my team and support system. Everyone really felt like I was on the up.

Literally between two race weekends I lost that fire, and that was a really hard thing to lose as an athlete – to go from being willing to turn yourself inside out for a win to suddenly not even care if you finish a race. So that was kind of the first thing that made me realise maybe something had changed. And then from there, things started to go downhill – slowly, but definitely notably. Like having a really, really hard time getting good numbers in training. I was getting sick pretty often. I wasn’t super-ill but I was definitely getting a cold more often than I’d like. I felt like my immune system wasn’t functioning well and I noticed myself gaining weight and just starting to feel really bad in my own body.

At what point did you start to become concerned?
It was really when we had tried a multitude of things and a lot of time had passed that I was starting to wonder maybe it was more complex [an issue] than needing a little bit of a break, or maybe not training enough, but it wasn’t until May 2019 that I knew that something was truly wrong. I went to the first round of the Mountain Bike World Cups and had actually done some pretty good training in March, April and May, so I felt like it was behind me. And then I went to these races and, even feeling really motivated again, which I had lacked at the end of 2018, I still had these really, really terrible results.

I had been working so hard [in training], so to get worse results than ever before, it felt like I was pedalling with flat tyres. So that’s kind of when I knew that something was wrong. I had gained a bit of weight, which I think I said on Instagram is always really hard to talk about because I never want to talk about weight in a way that makes other people feel bad about their own body, but you start to wonder: am I slow because I’m gaining weight or am I gaining weight because there’s something wrong? So I had to really battle that body image component during this time.

How was your physical health affecting your life/training/career at this point?
In March, April, May, I was doing pretty decent training. I was getting sick a lot so it was really fragmented, but by the time I got back from the World Cups, I think it was the stress of that trip that took any bit of good health and thyroid function that I did have and just froze it. So I really wasn’t training at all. Even looking through my training log for last summer, for the most part, in the biggest weeks I was doing maybe 12 hours [of training], and for me, it’s pretty easy to do a 20-hour week pretty casually at this point. I was not doing any strength, any yoga, anything off the bike – I would ride for a max of 2 hours, probably disappoint myself severely [laughs] during intervals and then go home.

Mentally, what does it feel like to be in the midst of an unexplained health issue?
It is so tough, especially with something invisible. It’s so hard to manage because you just feel tired all the time and you’re depressed and I was itchy and I was losing my hair, but I didn’t have anything to substantiate it. So I think – not to point the finger at anyone at all – it really felt like a lot of people didn’t necessarily believe that there was anything wrong. I think a lot of people generally thought that I’ve raced for a very long time, since I was a literal child, so some people just thought I was burnt out and maybe I was going to retire and be done. I even questioned it myself: what if it is all in my head?

You eventually got a professional diagnosis of Hashimoto’s. How did it feel to finally put a name to what you’d been experiencing?
For me, that was such a pivotal moment. I had done so much research myself and I felt almost positive [that it was Hashimoto’s] based on everything I had read and my family history with thyroid disorders. It seemed so obvious to me that this could something that was going on based on blood work and stuff. So to get that diagnosis felt really affirming because it was something that I had considered for a long time could have been a problem, but to finally have a doctor tell me that everything going on wasn’t in my head was so important for me.

But at the time I got that diagnosis, I really did believe that the worst of it was over; I had no idea how complex autoimmune disease could be. It was actually like the beginning of the battle, but to know that there was something in my body that was dysfunctional, that needed to be addressed and that was legitimate, made such a big difference to me mentally.

How did your diagnosis affect your life and training – did it require a lot of adjustments?
Yeah, I think something that people who have never experienced anything like this don’t understand is that my whole life as a professional athlete, at least most of the time, revolves around Hashimoto’s. I think there are a lot of people who probably have these sort of autoimmune or chronic diseases who sort of go about their daily life, and that’s great, but for me, as a professional athlete, it plays such a big role.

It took me a couple of months to realise that a big part of what was contributing to my thyroid being autoimmune was having food allergies, so I have cut out gluten and dairy and I have reason to believe that I will have to make other adjustments as well, but I’m doing it in time. So everything I eat I have to make for myself and I’m always double-checking labels. It makes it really hard to train because you can’t just buy something – you can’t just rely on your local café or gas station. I always have to have really prepared.

I definitely had to take my training super-slowly. You said in your email you hope that the PR (Ellen rode her first 10,000ft climb in training which I mentioned in an email) means things are going better for me this summer, and they definitely are, but it took so many months of just putting my bibs on and going for a ride and nothing more. It’s been such a long comeback because I lost so much during a whole year of feeling so sick. So it’s been a lot of adjustments and just meeting myself where I am.

Sleep hygiene is also really important for me and just making sure I’m always monitoring how I’m feeling so I don’t fall back into another hole is really important.

How else are you managing your condition now?
I also read a lot and I like to see different doctors if I get a good referral from someone to see if they have another idea or something that could help me manage it. The research is constant and I’m still learning but I actually find it really interesting, and obviously I have a pretty big vested interest in this research because everything I do if it helps me feel better, is worth it.

Have friends, family and sponsors been supportive during this period?
Yeah, absolutely. I think that a lot of my friends and my family were kind of surprised when I did finally talk about Hashimoto’s in my video on Instagram because a lot of people didn’t realise just how dark a time it was. I spent a lot of time last year during this process in Tucson in my then-boyfriend’s house, and I think he was the only one, with my coach, who really saw just how it impacted me. Otherwise, I think I kept a lot of people in the dark because I didn’t know what was going on and I didn’t want to bring them down. I didn’t realise just how powerful it was for myself and others to talk about it, so I’ve definitely had a change of perspective on whether to talk about it.

But everyone’s been super-supportive and with creating my own program versus being on Trek Factory Racing, I retained a lot of sponsors from last year which I think really shows how invested my sponsors are in my comeback process. And some of them have taken a really big role in that comeback which really means so much.

Right now what does life look like – what’s your new normal? Are you still riding?
I’m actually riding more than I have ever in my life, which I think is a testament to how much my investment in getting healthy again has paid off. I’m in Boulder, Colorado doing a training camp with my new coach, Alan Lim of Scratch Labs and the Feed Zone. It’s been really amazing but I’m also just trying to have that perspective that this is what I’m able to do right now, and it might not be the case in a week or a month or a year. I’m just enjoying being able to be on the bike again and I’m trying to make really good decisions every day so I can continue to do this because it’s really, really what I want to be doing.

Have your expectations, goals or approach to riding changed?
Absolutely. I was so spoiled and I had absolutely no perspective before I got sick. I would just be able to do whatever I wanted when I was healthy – I never had to focus on nutrition or sleep or whatever, I was one of those super-fortunate young, talented athletes that could go to college, stay up all night studying and still do pretty well on the next day’s training ride. And now I have to be one of those people that’s so deliberate and so metered in her efforts. It means I get dropped a lot on training rides but for me, my approach has changed because I’ve seen how much it hurts to not be able to ride and to be too sick to do stuff with your friends. I would rather be last on a training ride every single day, like I have this summer, than not be able to train at all and just be in bed. So I think this has given me a lot of really good perspective.

You’re a huge inspiration to aspiring young riders and run your Quest Camp training camp for young women. What are your hopes for its future?
Thank you for saying that. I am still hoping to do the Quest next year, but it’s really hard with the coronavirus. It’s something that means a lot to me, but I think that part of the reason that the Quest is so good is because of the friendships forged between the young riders, so to do something socially distanced with the programme I think would take away its impact. So we’re hoping to do it next year, but obviously it’s going to be coronavirus-permitting. But it just means so much to me, it’s the most amazing highlight of my year.

I had such good mentorship as a young athlete, but I realise that as a young woman this was super-unique and that there aren’t a lot of resources just for young women, where they’re not just stuck on the back of the boys’ training ride. I always try to create a space just for young women and I absolutely plan to continue to do that. I may change the size and the scope or the target of the camp, but I’m always going to continue to invest in young women because it means a lot to me and I know that it’s really good for the sport.

Lastly, what’s making you smile right now?
Dogs, all the time. I love dogs, I saw a Borzoi the other day – they are some of my favourite dogs. I [also] just saw the most beautiful wedding photos on Twitter of these two people who hiked a mountain to get eloped and that made me smile a lot. I’m also thinking about buying a camper and living out of it, so I’ve been doing a lot of research on living out of a camper and that’s making me smile as well.

Who are you sponsored by right now?
I’m sponsored by Trek Bikes, Velocio Apparel, Red Bull, Pete and Gerrys, SRAM/RockShox/Zipp, Hello Blue CBD, Wahoo, Oakley, and Bontrager.

You can follow Ellen on social media via www.instagram.com/ellenlikesbikes, www.facebook.com/ellennoblecyclist and www.twitter.com/ellenlikesbikes. Find out more about Ellen and her Quest Camp by visiting www.ellennoble.com.