To have done so much with so little.
On learning how to stop putting bandaids on gapping wounds.
One of the least helpful things my former rheumatologist said to me, after he diagnosed me with lupus, when I asked him if I could continue to run was “You can keep running but I am sorry to say you will never reliably feel good ever again”.
A lot of running is normalizing discomfort and enduring suffering and so I did not feel defeated by his statement. I realize now, almost 2 years later, that because I stopped expecting to feel good EVER, that I went down a path of pushing through when my health was crap and stopped actually trying to feel better. I stopped trying to tune in to my body and started tuning out. When things got bad, I would be treated for symptoms and would continue to limp along until the next time my health tanked out. I wanted to show myself, and others, that we can do hard things even when faced with incredible hard situations. I wanted to help others not give up, to keep trying, to keep going.
I realize now that I had given up on feeling good. Yes, I tried medications and protocols and did what I could to be as healthy as I thought I could be. But in reality, I didn’t really believe I could get better. I just hoped I could hold it together and perform well enough, even if I was never truly healthy. I see now that my body is an amazing compensation machine and that it worked so hard to keep me going, even when I was running on fumes. Until it ran out of ways to compensate and maneuver. Given the trauma of my past, I am excellent at dissociating from pain, but eventually, even I could not ignore the signals from my body
After FURTHER, I felt pretty darn good. Or so I thought. I was excited for the rest of my year. I was eager to get back to training. But one minor illness a few weeks after FURTHER later, everything fell apart. And because I had normalized feeling terrible, it took me a while to unravel just how bad things had gotten.
Over the past 3 months, things deteriorated quickly and I found myself at the doctor, week in, week out, begging for him to listen to me. I was brushed off many times, but came back, again and again. I may have normalized suffering, but even I could tell something was really wrong.
Essentially, my body was just giving up. Almost all of my autoimmune diseases were flaring the worst they ever had. Things that had been stabled for years, like my Hashimoto’s thyroiditis, became wildly out of balance. I found through blood tests I got done myself, that I had severe malnutrition because my guts had stopped absorbing almost everything. The Hashimoto’s flare masked what would have probably have been massive weight loss from gut issues and lack of appetite. I told my doctor a month after FURTHER, “I think something is wrong with my thyroid” and he refused to even test it. I tested it myself 6 weeks later and it revealed that my TSH was 3x higher than it had ever been at its worst (without medication) and I had not changed my medication. I told my doctor in early May that I was concerned my Crohn’s was flaring, or worse, and he put me on a medication I’ve used in the past for SIBO and told me not to worry. But it was clear to me that I should actually be worrying. One does not have more than a dozen nutritional deficiencies for no reason. One does not have terrible symptoms of multiple diseases without cause. I should be worrying. I should actually be doing something different. I felt like I was free falling, physically, mentally. I knew I had to do something different. I knew that I had to stop believing that this ill-health was simply how it was going to be. I had to stop trying to bandaid things long enough to get back out there and keep on racing.
So I decided to stop. I decided that doing the same thing over and over again, was not going to work. I needed hope. I needed new perspectives. I needed to start believing that being healthy was actually possible for me. I needed to stop fighting to be well enough to race (even at a super diminished capacity) and needed to start fighting for my life. I needed all of this AND I was also in the worst mental health space that I have ever been in. I was in a place where I was ready to give up and very much stop fighting.I wanted to quit, be done, fuck it all. The very moment when I was ready to give up is the very moment I asked myself, “but what if you don’t”. Surviving what you think you cannot makes everything else feel easy. I traded in my “fuck its” for “fuck this”. I took one step, then another, and another.
When I went to Comrades, I knew I was not healthy. I knew I had not done ANY workouts for the race. And I knew that I wanted to be there and participate in the race because it is important to me. I had started working with Dr. Moos out of Austin on the recommendation of my friend, Colleen. We got as healthy as I could for Comrades and I was happy and grateful to be there. The race was painful and hard and I suffered. But I fought to finish and I am so proud of that. I also knew, even before Comrades started, that I would be clearing my schedule for the foreseeable future in order to actually try and get healthy. It had been painfully clear to me that I could not continue in the way I had been. I would never get better if I continued to relentlessly push forward. I had not heeded the warnings of the past two years and the collapse of my systems post FURTHER, was just the wake up call I needed. Those shaky steps I took out of the darkness gave me hope and hope gave me courage to change my path.
I was tired of trying to compete at the highest level of the sport, while operating at less than 25% of my healthy capacity. I was tired of crossing my fingers and hoping that a flare or bad health patch wouldn’t destroy my plans. I was ready to stop fighting for finish lines and start fighting for healing and health. I finally had a glimmer of hope that it was possible for me to be much healthier than I have been in a long time.
As we’ve pulled on the threads to unravel the “mystery” of my health, we have found solvable issues that my other doctors just didn’t bother to investigate. We’ve discovered countless problems, but with it, a roadmap filled with solutions. It is going to be a long road to health but at least the path is much clearer. There are still more tests to be run, more stones to be overturned to ensure that we are not missing anything. I do not feel good on a day to day basis. Feeling good in the long run sometimes means feeling pretty awful in the short term. But I am calling upon my endurance to get me through. When I want to quit, to stop, to opt out of this, I remind myself that I am stronger than this moment, this feeling. I remind myself that feeling truly healthy is worth this struggle.
I have not been keen to openly talk about this because I don’t really like talking about things that I haven’t figured out. I don’t like being seen “in process”. I don’t like it when there are unanswered questions. I don’t like being wrong or uncertain. But I also have realized that someone may need to hear this: you CAN stop. You don’t have to muscle through. You can take your time and do what you need to in order to feel good. Our sport normalizes pushing through at any cost and while I have always wanted to inspire people to do hard things, I also want to inspire people to take care of themselves. I want to inspire people to stop before they have burned themselves out or destroyed themselves. I want to give myself, and therefore others, permission to stop trying to constantly prove myself and instead do what is right for myself. I am enough, you are enough. Period.
My journey back to health is far from over. We do not even know if we have all the information yet. But I am committed to this journey and fighting for a future self that is happy, healthy and healed.
You are inspiring and as someone who has been on my own journey with advocating for my chronic conditions I am always inspired by your writing. Thank you so much for all of it!
Thank you for sharing. You are so brave, and I appreciate your vulnerability.