Dealing with the pain of multiple life changing diagnosis
I haven’t posted in awhile, I had been trying to figure out how to exactly formulate this post since the summer. Being a female athlete you have many things against you and many women get into sports not because they enjoy them but because they want to remain healthy or lose weight. At some point for a few it can take a turn down a dark street where you become so fixated on perfection and forget that it’s for fun and being healthy but you wind up actually jeopardizing your health.
I want to preface this post with a little background on me. I had started my endurance running journey in Graduate school after a senior year of partying and studying, while not eating so healthy because I never wanted to be around my awful housemates. I had gained a decent amount of weight, most of college I was between 95-105 lbs in high school I didn’t even weigh 100 lbs the day I graduated, I’m only 5’2 and I’ve always been petite but at that point I was around 130 lbs, though that may not really seem like much, on a petite frame it can be a dramatic difference in the way you look.
When I got to grad school I decided to start working out and get healthy again, I started to eat vegetarian which landed me becoming anemic until I figured out I wasn’t eating as balanced a diet as I thought. I started to run a bit more and when I got out of grad school I ran my first half marathon in 2008. I continued to run after that and kept pushing myself that I went back to the same course a year later and scrapped 30 minutes off my time, that same year I ran my first marathon. It wasn’t fun and I didn’t train as well as I’d hoped but when I got my pictures back I still didn’t like the way I looked.
Over the years I’ve battled with not liking the way I’ve looked, in high school I was scrawny and just looked awkward and then years later I felt like a busted can of biscuits. To this day I can maybe recall only a few times when I really felt comfortable in my own skin. When I had gained the weight and had to buy more clothes it pained me, I was used to being “so small and cute” and I really didn’t feel like that anymore. I guess I prided myself on being one of the smallest people in my circle of friends. I didn’t like the way the new weight sat on me, I had love handles and my face was chubby.
Fast forward to a few years and many races later, I was down to 100-105 lbs again and I felt better but still occasionally felt like I looked fat, I strived to have the 6 pack I had in high school and my first 2 years of college. I became incredibly obsessive about the way I looked all the time and no matter if someone said I looked great to me I really couldn’t see that, I still felt like I looked like I did in college. I didn’t ever want to go back there, part of it was health related because type 2 diabetes and heart disease run in my family but now that I look at it a lot of it stemmed from vanity and the constant pursuit of perfection. I started to take pictures of my stomach every week and I can still see them on my phone and say “dang i looked good, why did I think i didn’t?” I got to the point that last summer I was running every day in pursuit of this obscene goal for myself. I never really spoke to people about it because they already thought I was crazy for thinking I looked awful, which is why I still don’t really mention it to most people because I don’t want them to think I’m looking for pity or compliments. I don’t comment for pity or compliments and I’m bad at taking compliments anyway. I still am baffled when I hear someone use the term “tiny” to describe me because to myself I don’t look that small.
For the past few summers I’ve been getting blood work done around my birthday, they do this because I’m an endurance athlete and they want to make sure that I’m healthy and not have issues with anemia. This past summer really changed my life and my perspective on a lot of things, it made me realize a lot about myself. I got my blood work results back the day before my best friend’s wedding and they weren’t good.
Usually I pass with flying colors, this time everything looked good except I exhibited mild anemia but that wasn’t the worst of it. I get tested for various hormones because of being a petite female athlete and normally I’m in the average range but at the lower limit. My doctor noted in the panel that she was going to have me see a specialist, an endocrinologist because my hormones came back suggesting that I was starting early menopause, even when being on a birth control it still wasn’t helping me be “normal”. When I saw that I started crying uncontrollably, I had just turned 31 two weeks prior and this just devastated me, what did it mean? Could I reverse it? Would I be able to have children in a few years?
She sent me for more tests that cost a lot of money, I got tested for Polycystic ovary syndrome. I spent the whole wedding weekend crying. I had to excuse myself on multiple occasions to go cry it out in the bathroom. What did all of this mean for me in the short and long term?
Two weeks after the test results I went to the endocrinologist with a whole list of questions for her. I sat there shaking uncontrollably as she talked to me asking about my eating habits and my cycle, trying to get a feel of who I was and what I’m about, how I want my life in a few years. I told her I wanted children but not until closer to age 35 so I have time to qualify for the Boston marathon, travel and hopefully get married before having kids. She looked me dead in the eye and told me I didn’t have that long, that I’d be lucky at this point if I could conceive a child. She said I could reverse some of the diagnosis but I’d have to make a LOT of changes: decrease my mileage, change my diet and change my mental outlook on myself.
She diagnosed me with hypo gonadotropin amenorrhea, I’ve talked about amenorrhea on the blog before. It’s basically when a woman stops having her period for more than 90 days because of low hormone levels; I personally had gone almost a year without a period, mind while on birth control that should regulate my cycle. I honestly didn’t mind not having a period, I didn’t have to worry about it getting in the way when I’d go for a race but I really wasn’t thinking of the consequences associated with it. When a woman has lower hormone levels, especially estrogen, they are more prone to having osteoporosis and having a greater occurrence of stress fractures because the hormones are needed for bone health. My specialist said I was going down a path like one of her clients, high mileage, disordered eating and that woman ended up with a double tibial fracture and she can no longer run. Hearing all of that scared the crap out of me and I didn’t want to be like that woman, I wanted to be able to enjoy running for many more years.
All this news at once really scared me, I really didn’t know who to turn to or honestly who would understand? Along with the amenorrhea diagnosis she diagnosed me with severe body dismorphia and also borderline anorexia. I was asked to go see a nutritionist and decrease my mileage to no more than 20 miles a week. I had started to come to some sort of conclusion that I’d need to see a nutritionist because I realized after a 19 mile training run that I had only eaten dinner the night before, the rest of the week I only ate lunch; as a matter of fact from what I could recollect, I had only really been eating lunch for months. The only times I ate dinner was when I went out with friends, I even realized that I’d go out to eat with the guy I’m dating and sometimes I’d just say I wasn’t hungry and sit there.
A week after my specialist appointment I saw my nutritionist for the first time, she used to run marathons but now does body building and has worked with many people with eating disorders. She looked at my mileage and my fueling and determined that I did in fact have an eating disorder, possibly not completely intentional but I did. I was barely eating 1000 calories a day, most people that are trying to lose weight are told to maintain 1200-1400 and I wasn’t even getting that. Besides the fact I had low caloric intake, my body was using up more than I was putting in so anything I ate it was storing the carbs as fat because I was basically in starvation mode. I was told I needed to maintain no less than 1400 calories a day, my first goals were that and try to eat dinner every night even if it was just egg whites and toast with a protein shake.
The first couple of days were rough, I forced myself to eat dinner when I wasn’t hungry but after a few days I found myself wanting to eat everything in sight. I wasn’t allowed to have a lot of sugars anymore, that meant limiting sweets and significantly decreasing soda and juice. I wasn’t allowed to have a lot of soy anymore so it wouldn’t skew the hormones, so I was back to eating some meat-mainly poultry and she was fine with that. For the first 1-2 months I spent most of my time eating out rather than making my own meals because I knew what the calorie content was and if I made it myself I’d be more apt to have it be low calorie, which would negate what my nutritionist was trying to do. When I got up to making my own meals, slowly with making lunch and making more for dinner I started to get really anxious about what I’d eat, where I’d get my protein and it made me go crazy.
I used to obsessively track my weight, bone mass, muscle mass, fat mass and water weight each day. I got to the point where I didn’t want to see the scale, I didn’t want to know what I weighed because I knew I had to gain some weight and no matter what the number was I wasn’t going to like it. Going into the doctor I weighed around 108-110 lbs and my bmi was around 18, my body fat they estimated around 12%, normal BF is no less than 19% and BMI 20.
I did well, I hadn’t weighed myself in about 2 months, my monthly cycle kind of came back and is still irregular but then again it never was since I was 17. I was doing well not weighing myself, I’d avoid the mirror. I just went with how my clothes fit but when by accident the guy i’m dating grabbed my waist it made me self-conscious because I knew I’d gained there, I could feel the skin over my pants when I normally didn’t have that. I asked him to not do that because of how it made me feel, he just said he didn’t think I looked any different, nobody thought I looked any different except myself.
I stopped running unless I was running with people I coach or I had a race. I get really nervous thinking about starting to train because I’m afraid I’ll revert back to where I was. I know the running suppressed my appetite but after some recent races I realized that maybe it isn’t anymore, maybe I’m used to it. My most recent nutritionist appointment she said it was probably a mental thing more than a physical thing but to just eat things that won’t upset my stomach.
When I went for my second visit to the endocrinologist she was pleased with my progress. I had asked them to not tell me what I weighed, just keep it in their file. My doctor then comes in and says she’s glad I gained the weight she wanted and then some, I was 120 lbs on their scale. I tried to maintain my composure but inside my head I was absolutely freaking out. I hadn’t weighed that much in years, it was at the edge of my comfort zone and I knew what I looked like if I weighed more and it just frightened me. She then harped on the fact that when I decided to have kids it wasn’t going to be a cake walk, I’d most likely be trying for awhile and the reality was that I’d most likely end up having to do IVF or hormone therapy to even be able to conceive, that I was very likely to miscarry if I did get pregnant. She also stated that there was no way at this point I could get pregnant because my body fat was still too low and that when I’d want to start trying I would definitely need to gain a bit more weight/body fat than where I am.
I told my doctor I wasn’t intending to have a kid for another few years, my goal right now was to try to qualify for the Boston marathon for 2015 and if I didn’t then I’d hang up my hat because I know my body won’t be able to do that level of training and be able to get pregnant or sustain a pregnancy. I’m also putting in my head that I may never be able to have children and if that’s the case then I’ll look at other means like fostering or adopting. That conversation brought me back to years ago when my best friend and I had joked about her carrying my children for me because I wasn’t sure if I’d be able to have one (foreshadowing something I already possibly knew?), but she said she would only do it if there was a medical reason. At this point I wouldn’t dare ask her to pony up on her deal from years ago, she’s in graduate school and just got married, she’d want to have her own children first, not mine. I don’t think I could ever ask her or anyone to have my children for me, it sounds selfish of me to ask a friend.
After this appointment I started to weigh myself again, I recall one night that I weighed myself and it said 120 lbs, I just broke down crying. I texted my best friend and she called me. I told her I feel like such a hypocrite because here I am coaching people and telling them it’s ok to love their bodies and be healthy but yet I don’t love my own. I can look at my 14 year old niece and see her as this beautiful, healthy, slender girl but in reality she’s a tad taller than me and only weighs 10 lbs less. How can I think that she looks good and not see that in myself? I don’t like over-talking my weight/body dismorphia struggles because I don’t want to bring others down.
I’m now about 4 months into my treatment, there have been good days and there have been some real lows. I started to journal to get out my feelings so they didn’t fester inside of me. I hit some points were I relapsed and I’m sure it’s still bound to happen as I go through the process. I still get anxious at some meals but it’s for making sure I’m getting enough calories. I recently went to Disney and I planned out all my meals so I knew I’d be getting sufficient calories for the ones I’d be burning.
Can I say now 4 months in that I feel better? I honestly don’t, it’s a daily struggle with myself. Some days I look in the mirror and think I look amazing, other days I’m standing in front of the mirror in my underwear pushing back skin on my stomach and thighs saying “if it would just stay like this I’d be really happy.” I see pictures of myself and think “I really am thin” then other days it’s more like “ugh I look awful, that shirt shows the weight I’ve gained”. I know it’s going to be a battle, it always has been but I try to think of why I’m doing this. I want to not get osteoporosis, I want to be able to have a kid some day, I want to be healthy and happy.
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