Chapter 7: Stuff nobody likes to discuss, but is real and pervasive

After our heavenly burger night, we were early to bed that night. It was that night that I actually began writing this story. I felt so tired of telling my story and explaining to people all of my history and how it goes together.

The next day, we both had a little work to do even though we were both off. I had been helping compose a Female Athlete Wellness webinar series with my colleague Jessica (same coach I mentioned earlier) and also my colleague Michelle Lyons. I had to finalize my portions before we could send them off to publish and eventually sell. I also interviewed my colleague, mentor, PT crush and friend Julie Wiebe as part of one of my webinars, so it was a joy to talk to her about female athletes and about my health issues. It is so amazing how people I never see can be so compassionate. And sometimes they’re more compassionate than the people I see all the time.

This experience, so far, has been so eye opening. The health nerd in me loves learning all the stuff that is going on with me because it is just so fascinating to me how the human body works! But of course I wish it weren’t ME that all these things applied to. I have really remained fairly calm and grounded throughout the process—with the occasional and necessary worry and breakdown. I attribute that to the coaching I’d been doing with Shawn and a LOT of the personal changes I’d made over the past year.

Despite how I was handling it and the endless support from my husband…my close friends and colleagues haven’t always followed suit. I give them credit. Nobody is prepared to hear “I have this tumor in my lung.” It’s not just everyday conversation. People don’t have experience to fall back on regarding what to say and how to react. Between the lung mass and the Candida diet, people—including close friends and colleagues I see every day—have unknowingly come across as judgmental, devil’s advocates, cynical, and dismissive.

Regarding my weight loss:

“Wow. You look way too skinny. Are you SURE you should be doing that diet? You’re basically committing suicide/you’re going to become anorexic.”

Newsflash: I HAVE to be on the diet. It is not really a choice. It’s not some fad diet and I’m just getting recommendations from some website. My medical doctors have said I HAVE to do it. Go enjoy your sugar and stop judging me for not eating it. Oh, and while we’re at it—since when was it OK to comment on someone who is “too skinny?” Why is that any different than telling someone that they look “too fat” and judging their diet?   I get that you’re concerned, but there are better ways to show concern. People fear what is different and I understand a lot of their reactions are out of fear, shame, and their own worry or anxiety. I have to laugh and brush it off because of that. But it does redefine who I confide my feelings and worries to.

“I need to lose weight and you’re here complaining about losing weight. Stop complaining. You can have some of my weight that I need to lose. Or maybe you just shouldn’t do that diet—clearly you’re not getting any carbs.”

This is not about you. Try forcing yourself to eat 2000+ calories a day on no appetite and not exercising, only to continue to lose weight. My clothes don’t fit. I don’t have energy. For a very healthy and thin person, losing weight unexpectedly when it is NOT intentional is NOT a healthy thing. It is a sign of illness. I’m not asking for your pity, just recognition that this is a struggle, too.

Regarding my condition:

The most common reaction:

<<<Blank stares when I share the news with people>>>

“Well, at least you’re young.”

Well, that’s actually the terrifying part. I have a tumor and I’m young. In fact the tumor was there when I was 17. Outcomes aren’t good in young people with tumors. Granted, we are hoping and praying this thing is benign, but thinking I am “young” does not really make me feel better.

“Candida diet and inflammation? That seems like a easy diagnosis/easy way out. Isn’t that just a fad?”

I have medical tests to prove it. Try living through a fever every day and not being allowed to take anything to help it. Then tell me it’s made up.

“A biopsy. That’s not an actual surgery.”

Well actually, it is when they have to do surgery to get to the body part to biopsy. I didn’t spend 1 hour on the phone with the pre-op nurse telling her my entire medical history and I won’t be staying overnight in the hospital for a non-surgery.

“You think you are stressed. Let me tell you about all the stressful things I’m going through right now.”

No, just no. This is never ok, not in ANY part of life or relationships with others. While I will be patient for you, compassionate, listen and offer advice if you want it, this is not a game to see who wins the trophy of “My life is worse than yours.” In fact, that’s a terrible game that nobody needs to play.

Needless to say—the list keeps growing with “people say the darndest things.” The good news is for every non-compassionate, sympathy-not-empathy, and rude thing that someone says, most of my friends, colleagues, family members and even patients have showered me with so much compassion, support, and encouragement. It is so uplifting to know people have my back. Some people I haven’t been as close to have been THE MOST compassionate and supportive.

It’s really true—what “they” (whoever “they” are) say: in times of struggle, your true friends come out. You’ll find out who isn’t really a friend too. I’m not sad about that and I don’t think it’s anything personal. I know that people struggle with scary and fearful situations and project their own fear and anxiety onto me. Or they confuse sympathy with empathy and try to make light of a situation when all I need is for them to acknowledge and feel the darkness with me in that moment.

So back to the story: The holiday weekend came and we were good to go.

We got some Julie-friendly food items from the new local farmer’s market (Sprouts, I love you SO much) and headed up to my family’s cabin in Blue Ridge. My parents welcomed us with open arms and had a million questions about my crazy diet and condition themselves. We cooked all of our meals and enjoyed a rainy weekend in the mountains. I read a book, went on a few exhausting short walks (thank you, anemia) and we went for a ride through the mountains/lake area. It was refreshing and recharging, and I nearly forgot about everything I had been through thus far. I was looking forward to the next step.

Read on to Chapter 8: Making a game plan for more on this story!