Reflections on my 1-Year Crohn’s Diagnostiversary

I never expected that on my first Valentine’s Day as a married lady, I would be sitting in a gastroenterologist’s office being diagnosed with an incurable, lifelong autoimmune disorder. But, that’s what happened! So, on my second Valentine’s Day as a married lady, I thought I would take a little time to reflect on my first year as an official crohnie, to share some of the things Chris and I have learned and felt along the way.

  1. Crohn’s taught me it’s ok to ask for help. Before I got sick, Chris and I had both had some pretty minor struggles with anxiety. What I mean by that is we both worried, a little more than we thought was normal, but we could manage it and continue to function without outside help. My siblings and I all have a history of worrying excessively about our health (ironic, isn’t it?), and looking back I now know that I would have saved myself a lot of unnecessary suffering if I had talked to someone earlier about that, but I was too stoic to do so. When I got sick, the borderline anxiety that we both experienced spiraled completely out of control; I was so depressed and anxious that I struggled to even function normally. Eventually, Chris and I both realized we needed to see someone about what we were experiencing, and we did. We learned coping strategies individually, that helped us each feel better, and we also learned ways to avoid making each other feel worse. Sometimes it’s easy to get into a sadness spiral as a couple, where you share things that are upsetting you, and because your partner loves you, those things in turn stress him/her out more. I think it’s important to learn to be honest and open without overburdening your partner, and this is one of the most valuable things that came out of therapy for both of us. I read some books and blogs–the most helpful of which was probably How to be Sick by Toni Bernhard. I learned about meditation and breathing exercises and embraced yoga again. Oh and by the way, my psychiatrist prescribed a low dose of an SSRI medication and supplements for me (although Chris’s did not). I feel exactly zero shame in sharing that, especially knowing a little about how gut and psychological health are connected. After a few months of medication, I remember Chris telling me, “I felt like you were gone. For the first time in forever, I feel like I have you back.” I felt that way too. And we both agree that we are stronger individually and as a couple than we were before Crohn’s.
  2. Crohn’s has changed my interests. I used to run a lot–I ran two half marathons (very, very slowly) in the two years before I got really sick. I also used to ride my bicycle all over town, and stay out all night listening to live music and dancing and sipping on beer. I can’t do those things anymore–or at least, I can’t depend on doing them. Last summer, Chris took me to a Neko Case concert and I had a few glasses of wine and a burger on a gluten-free bun and I sang and danced my heart out and it was one of the best nights ever. And on days when I feel well enough, sometimes my greyhound and I jog instead of just walking. He usually even wimps out before me, too! But I kind of have to accept that I can’t drink wine and dance and eat burgers every weekend anymore, and I might need to consider specializing in 5Ks rather than half marathons. BUT! I’ve found new things to do. I know so much more about cooking and nutrition than I used to (just ask Chris about the shrimp quesadilla incident if you don’t believe me). I’ve learned to crochet. I have a whole shelf of novels that I’ve read–FOR FUN–in the last 18 months. I’ve fully joined my husband in his appreciation of TV and movies. What seemed before like wasted time at worst, or a guilty pleasure at best, is now an opportunity for us to relax and spend time together. Last but definitely not least, because I’m at home a lot more we finally adopted a dog, which is something we had talked about for a long time, and we are currently fostering another. I know it might sound silly, but having these sweet canine creatures has brought so much joy and love into our house. Now I can’t imagine life without a fur child, but before I got sick we never felt like we had time for one.

See, here is a recent project:

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Here I am cooking in the awesome apron my sister sent me!

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Chris with our dog (laying with his paws on daddy) and our foster (demanding attention):

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Yeah, the dog situation is pretty serious…here is our greyhound dressed up for a Christmas parade, along with my niece and me:

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  1. Crohn’s has changed my priorities. I used to be very career-oriented, and I’ve worked very hard to have a prestigious and lucrative career. Now I live every day knowing that I might not be able to have a career. Or, I might be able to have a career, but only if I give up…like…pretty much everything else. Even before I got sick, I was beginning to realize how much more important family, love, and relationships are to me than my job. My illness has only confirmed this. My mom flew out to be with me after surgeries, to help us cook and clean and keep me company. Eventually, my parents actually moved across several states to be closer to us. My in-laws have cleaned the house when I’ve been too sick to do it. My nieces have colored beautiful pictures to help me feel better. One of my best friends flew across the country to spend a weekend watching reality TV and getting massages with me. My boss and advisers have been really great, offering excellent advice and putting up with me when I’m flaky and distracted and crying and in general being less than a perfect professional, but this encouragement and understanding is not the same as the support of a loving family. I still don’t think I could stay at home full time, but I am at peace with working part-time, or working in a less prestigious (and less demanding) job than I am qualified for if that’s the way things have to be. I am open to all kinds of possibilities that I never would have considered before, and that ambiguity is actually kind of awesome.
  2. Crohn’s has changed the way I interact with people. I am not as much fun as I used to be. I go to bed early almost all the time. I hardly drink and I have weird dietary restrictions (that I follow…like…90% of the time). I can barely be convinced to drive more than 10 minutes at a time, especially if it’s after dark and I’m already wearing yoga pants. So, I don’t spend as much time with a lot of my friends, and I totally get why some of us have grown apart. It would be easy to feel bitter about this, but I really don’t. Friendships change over time even in perfect circumstances. While some of my friendships have faded, some of them have grown stronger. One of my best friends (the one who flew out to visit me) is also chronically ill, and I think, if anything, we’ve grown closer over time in spite of the geographical distance separating us, because we totally get what the other person is going through. I have another friend who actually has Crohn’s, and we might have eventually lost contact after she moved away from the desert, but because of our shared circumstances we are in frequent contact. I’m so grateful to have that support. In general, I’ve just become so much more compassionate than I used to be. Probably at least 80% of the people I interact with day-to-day have absolutely no idea what I am experiencing; they just see a girl wearing leggings as pants, breaking all the fashion rules, and walking way too slowly across the street. They don’t know I just had a surgery last week; they can’t see the gigantic scars and drains sticking out every direction like porcupine quills; they don’t know that I probably just used all the energy I have for the day making myself look not sick and getting out of the house. So now, whenever I come across someone who is annoying me or seems a little strange, I think of all the things that might be going on in their life that I don’t know about. The result is a kinder, gentler, less irritable version of me, and I think that’s definitely a good thing.
  3. I’ve learned the real meaning of carpe diem, and it doesn’t mean what I thought it did. One of the hardest things that has happened to us because of my illness–at least for me–was having to cancel our honeymoon. I have always had this absolutely insatiable wanderlust. I haven’t often had the time or finances to travel internationally, but I dream about it, all the time, and for as long as I can remember. So when my husband and I agreed that it was really time to cancel our flights and reservations in 4-star boutique hotels in Istanbul and Antalya, it really almost killed me. For real. It had been all I’d thought about for months. I cried for days. I felt really, really sorry for myself. I’ve finally had to accept that I can’t go to Turkey today or tomorrow. Today I have to find all the joy I can in watching 5 episodes of Friends with my husband, in squishing my greyhound, and in reading a really creepy book in the bathtub during my third bath of the day. Maybe next year we can go to Turkey. Or maybe we have to change our plans and go somewhere with fewer potential barriers to communication and reliable emergency healthcare. We’ll see. I’m getting better at recognizing that life doesn’t owe me anything, and being grateful for what I do have already. Life doesn’t owe me a two-week long honeymoon on the Mediterranean. But, in fact, in the scope of human existence, I’ve really lived a pretty extraordinary life already. I mean, I have air conditioning. I can afford to eat meat and fresh vegetables and chocolate every single day if I want to. I don’t have to worry about the Bubonic plague or cholera or anything. Do you know how lucky that makes me already?!

I don’t mean for this to sound preachy, or like I’ve got it all figured out. Some days I still totally feel sorry for myself and curl up in a ball and cry. Sometimes I have to save a difficult conversation for a day when I’m feeling especially optimistic. But the bottom line, to anyone who has just been diagnosed with Crohn’s or another chronic illness, is that it gets so much better. It takes a lot of work, time, and support, but having an autoimmune disorder does not mean your life is over–in fact, it can be even better than you hope.

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2 thoughts on “Reflections on my 1-Year Crohn’s Diagnostiversary

  1. Hi Misty, I really enjoyed reading your insight and reflection. I have heard what a great cook you are, making all kinds of items. Wishing you the best and I have found some of the best parties are with the one you love

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