Defying the Diagnosis: Taryn Simpson

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For Taryn, the pain she felt after exercising was totally normal because she knew nothing different. She thought it was a result of a great workout or training session, pushing her body to be the best that it could be. So it wasn’t until the pain was crippling and she had to stop everything that she realised something was seriously wrong. Taryn had rheumatoid arthritis, and it wasn’t going away. We spoke to Taryn to hear more about her story and her determination to defy her diagnosis.

I was incredibly hyperactive as a child (and still am)! My parents introduced me to gymnastics at a young age as a means of channelling some of that energy and I ended up loving it and being pretty good at it. I come from an active family, and my parents are lovers of the outdoors. While my brother and I took part in sports and went skiing and camping as a family, most of my outdoor exposure was through playing outside and running around in the woods behind our house – a luxury afforded by living outside of the city. My parents emphasized the importance of being active and getting outside, which I’m incredibly grateful for. That really set me up as a lover of the outdoors and of being active.

I’ve basically suffered with sore joints for as long as I can remember. It’s hard to explain but I thought the pain was normal. The only normal we know is what we experience for ourselves. So, what I experienced for years was my baseline and I saw the flare ups as overuse injuries (lots of sprains, strains, a couple broken bones – which I think are pretty normal for active, raucous kids). Gymnastics is also high-impact and demanding, where pushing your physical limits is so often part of the sport. Injuries aren’t uncommon and longer-term pain and joint deterioration are kind of seen as normal. Ultimately, the pain was just a part of my normal life, so I didn’t really think of it as anything out of the ordinary, or at least as anything out of the ordinary for me (in terms of indicating something wrong physiologically).

It wasn’t until I was 24, in the summer of 2010 when I was working for a doctor in Idaho that I realised the pain wasn’t normal. At this point I’d stopped pretty much all the sports I loved. Hiking was about the only thing I could manage and while out hiking with a friend (and experiencing significant knee pain) he asked why I hadn’t done anything about the pain. I explained that I had but nothing helped and since no one seemed to have any answers I figured I’d just end up with a total knee replacement by 30 – and hopefully that would fix it. Seeing the impact of my very honest yet nonchalant statement and hearing how “not normal” my mentality was, gave me a little push to pursue an answer again. The doctor I was working for sent me to a specialist who he trusted to help me find an answer, and that specialist was the first person to ever address my symptoms as possibly being related to some kind of rheumatic disorder, as opposed to a strictly physical problem (previous doctors had considered improperly formed or tracking joints, partially torn meniscus, inflammation from overuse, etc).

The diagnosis was a big moment in my life. But honestly, all I felt was relief. For so many years I knew something wasn’t right but could never find an answer. Finally knowing the cause and having resources and treatment options was so reassuring. I had already given up so much in the way of physical activity and recreation that the diagnosis wasn’t really that daunting. I started researching rheumatic disorders and experimenting with diet. It wasn’t until my symptoms diminished to such an extent through my diet control that I realised how much pain and inflammation I had been experiencing for so long. I realised then how abnormal my “baseline” was.

Controlling my diet actually allowed me to start exercising again. I can still remember the first times I went hiking and running again without pain. Even just waking up and not being in pain. It was a complete lifestyle and outlook shift. I had been convinced that I wouldn’t be able to be active anymore, and in being able to reconnect with fitness, I found a passion for the outdoors and a love of nature that grounds and drives me today. I’ve found that controlling my symptoms is kind of a balancing act that forces self-care. Things that can cause my RA to flare up are poor diet (as mentioned before), lack of sleep, getting sick (compromising my immune system in one way has far-reaching systemic impacts), high stress levels and heavy drinking. I’ve learned to prioritize sleep and healthy diet, along with regular exercise – even if it’s a 10-minute workout in the morning or before bed – and I know how to listen to my body well enough now to know when I need to take a break.

At first it just felt good to get outside, but more and more I realized how much of a positive impact outdoor activities were having on my physical and mental health, so I really started to prioritize them. There’s so much evidence of the benefits of getting outside, and my experiences definitely agreed with that. Climbing was the first sport/activity I had participated in where the only thing holding me back was my own strength or technique, not my RA. I was driven to see how far I could go with it because I loved it and actually COULD do it without pain. It turns out that a lack of pain can be a strong motivator!

Emboldened by my progress, I decided to set myself a target. I wanted to summit Mt Rainier, the highest mountain in my home state of Washington. It would be no small undertaking, but for the first time, I thought it would be possible.

But I did have to remember that I still had limits and I had to learn not to push myself past them. This was a really hard lesson to learn, but so important. With hiking, things like proper footwear and hiking poles can really help maintain proper joint alignment and decrease impact. Eating enough so my muscles are better able to support my joints and keeping properly hydrated make a big difference as well. I’ve had to get comfortable being very honest about my abilities and pace with other hiking partners, and vocalizing my limits when they arise (sometime my knees will start bothering me during a hike and it’s important to let others know that, or let them know if I need to adjust my pace or take a quick break). Vulnerability in the outdoors isn’t always something people are comfortable with, and I’ve had to get past that. Fortunately climbing rarely causes my RA symptoms to flare up – one of the many reasons I love it so much. On long climbing days I just have to make sure I don’t work too hard, since overuse injuries are common in climbing.

It took a lot of work, a lot of training and quite a number of setbacks. But the entire process has been so empowering. Being forced to take care of my body has caused me to live a much healthier lifestyle and to find balance. Standing on the summit of Mount Rainier solidified that for me. I honestly wasn’t sure if I would be able to do it, and as I reached the summit tears started to stream down my face as I thought “I actually did it” (side note: crying at 14,000 feet isn’t a very good idea since breathing is already a challenge). High winds and warming conditions meant we didn’t have much time to relax and enjoy our summit, but now that I know I CAN do it, I’m excited to return for another attempt and to savour the moment a little more. But nothing will ever compare to that moment, knowing what I put into getting there, and knowing I can apply that kind of dedication to anything else in life.

I think one of the reasons I’ve worked so hard to overcome my diagnosis is stubbornness! I’m stubborn. Seriously. Very stubborn. And maybe I could be better about vulnerability. Because of that I think a lot of what people see as “strength” is my unwillingness to look or feel weak or incapable. For so much of my youth, strength was a guiding identity for me – as a gymnast, sprinter, weight lifter, snowboarder, school push-up record holder (ha, seriously though) – that macho tomboy attitude (toxic masculinity?) served me well on the surface when my body started to fail me. Maybe to some degree I was in denial; I refused to fully admit that my body was fighting itself, and that it was only going to continue to get worse.

Also, when you live with chronic pain or illness, I think it’s pretty common to normalize it. It really was my norm, I didn’t know anything else for years (decades) so I just saw it as nothing out of the ordinary.

From now on, I just have to take the time to learn what that treatment and lifestyle look like and actually follow them. Holding yourself accountable is both the easiest and hardest step. I don’t have any plans to stop climbing – all the things! There are three more volcanoes in Washington I haven’t climbed yet and doing all five in one season would be a pretty interesting adventure. I have no idea what the future holds as far as my RA. I have no way of knowing. All I can do is continue to take care of myself, prioritize my health and happiness, and live my life to the fullest – doing the things that bring my joy and fulfilment – so that if one day (maybe soon, maybe later, maybe never) my body stops cooperating or responding to treatment, I won’t regret the amazing years of health I’ve had. And fortunately, staying active has so far seemed to stave off further progression of RA, so hopefully that trend continues!

To read more about Taryn’s inspiring story and to read more about her climbs in Washington, click here.