As I anxiously sat in the waiting room at Dana Farber with my parents and husband last week, my husband was talking to us a mile a minute. If you know my husband, this isn’t a rarity, but this was on o v e r d r i v e. It was making me more nervous.
“You’re the worst when I’m anxious” I said to him in a playful manner. ” I’M TRYING TO MAKE YOU FORGET YOU’RE NERVOUS!” he said back to me. That’s when it dawned on me that he goes through every feeling, every mood swing, every high and low with me. In the past 6 months he has switched his diet to plant based for me (with the occasional Ribeye when we are out, which he so deserves), he has driven me to and sat beside me at appointments, comforted me in MRI rooms and has held me when I’m just having a God awful day. He’s been my cheerleader, my reality check and my punching bag through this whole thing.
I decided to interview him so I can learn more about how it feels to be in his shoes as a spouse that is helping and watching his partner go through a health ailment.
Me: First of all, how are you?
Chris: Tired and hungry. (he’s been working overnights and doubles, at least he’s honest).
Me: How did you feel when I was first diagnosed with a Desmoid Tumor?
Chris: Scared. Nervous. You never want someone you love being diagnosed with something you can’t control.
Me: What Have You Learned the Most Since my Diagnosis?
Chris: I’ve learned that nothing matters more than your health. That we focus on all the wrong things and at the end of the day none of it matters. Literally none of it.
Me: What do you think has been the hardest part of being the spouse of someone with a rare disease?
Chris: The uncertainty. Not knowing if what we’re doing is right or wrong. Making healthy lifestyle changes and still being anxious about results and tests because there is no concrete cure.
Me: What is something that surprised you about this journey?
Chris: How strong you are. You couldn’t even look at a needle a year ago and now you go into MRI’s without hesitation and actually look forward to doctors appointments. Complete 360. I’m not that strong.
(damn, brownie points for that one, he’s no fool).
Me: Do you find it difficult to relate to this journey sometimes? It being so rare and not knowing anyone else who has gone through it. Even on a healing basis?
Chris: I love the journey that we’re on, our reaction to it, how we’re learning from it. I think anytime you’re a partner of someone who has any kind of of sickness/disease, if you’ve never experienced it all you can do is be supportive. At times that can be easier said than done because we don’t feel what our partner feels be it emotionally or physically.
Me: Whats one thing you wish I knew about being a spouse of someone with a rare disease?
Chris: That everyday I wish it was me who had it and not you. That it’s not fair to have to sit and watch you suffer when I’d rather be the one suffering.
(I’m not crying you are).
Me: If you had advice to give to a husband/wife whose spouse was just diagnosed, what would you say to them?
Chris: I’d say be patient and try to always make the best of the situation. It could be better but it could be much worse. Embrace the journey and crush it.
Our support systems are so important and they often times don’t get the “thank you’s” they so deserve. I am grateful for every single one of my family, friends, and fellow Desmoidian’s who support and push me through all my bad days. so, THANK YOU, from the bottom of my heart.
I am one lucky girl.