Advice for Working Through a New Diagnosis

Hi, friends!

A while back, I blogged about how I maintain positivity with a chronic illness. Writing that post was cathartic in its own right, but it also got me thinking about the beginning of my journey with UC and the not-so-fun memories of receiving the initial diagnosis. And since it’s Crohn’s & Colitis Awareness Week, I wanted to share that experience since it might also resonate with some of you. While I have reached a place where I have made peace with the realities of my illness, there was a time where I just couldn’t handle the truth and thought that life would never be the same.

I was searching for a quote that would sum up the initial grieving process I went through (and that’s really what it is, grief over the loss of your “normal” life), and I came across the one below from Anne Frank.

“Think of all the beauty still left around you and be happy.”

This hit home in so many ways. Those first few days after receiving my diagnosis were so confusing. My mind raced a million miles per minute with so many questions. What did this mean for me and my life as I knew it? How long would it take to get better? Would this disease go away or would I really have it my whole life? 

If you followed my journey to (*knock on wood*) remission, it wasn’t easy. Actually, it was really hard – probably the most difficult thing I have experienced in my life. And while it was really tough at first to put a smile on my face and go about my day, life did get easier, and I began to realize that despite the new reality I was facing, I still had so many amazing things to be thankful for and to find joy in. Count your blessings. 

We talk a lot about the physical effects of an illness, but not so much the mental, which, in it’s own way, can be just as debilitating and hard to deal with. Below are a few of the realizations that I came to over the years that made the really tough times a little easier, and I hope that if you or a loved one is going through a health crisis, you will find these insights helpful.

1. Your feelings can skew reality

When I was diagnosed with UC, my mind went straight to the worst possible scenarios. Am I going to end up in the hospital? Will my life ever be normal again? Am I going to need surgery? It’s like we are wired to only see the worst-case scenario – but I learned that scenario is often just one of many. In the midst of my new diagnosis, I could only see the bad stuff, and I didn’t want to look on the bright side. I was basically throwing myself a pity party with all of my negativity.

Over time, I came to realize that my anxiety and feelings related to the uncertainty of my disease were really skewing my perception of reality. (Mal also helped me realize this.) Flight or fight is no joke, friends, and that reaction literally pushes our minds to the worst scenario, so that we are ready to deal with it. While it’s part of the body’s natural defense, it also leaves little room or brain power to logically think through options.

So, eventually, I realized even if the worst possible thing I imagined did happen, I would survive. (Again, also thanks to Mal.) I wasn’t going to let my illness take more from me than it already had, and I could live a normal life if I remained positive. 

2. Remember all the times you worried, and all the times it turned out ok!

Think back to all the times in your life when you faced all sorts of crazy unknowns. How did you handle them? You weren’t sure then what the future would hold or what was coming your way, but in the end, it was all ok. The same holds true for a new health diagnosis. I am a firm believer that no matter how tough the going gets, no amount of worrying will ever solve the problem. As Mal says: “Worrying is like a rocking chair: it gives you something to do but never gets you anywhere.” In fact, the stress will only make things worse. So remind yourself about the difficulties you’ve faced in the past and how you conquered them – you will do it again. Uncertainty and anxiety are often far scarier journeys to go through than what actually happens in the end. (The book 10% Happier transformed how I deal with anxiety.) 

3. Remember you will not always feel this way

The first few days after my diagnosis, I woke up every morning wondering how I was going to live my life with a chronic disease. My outlook was so negative, and what used to bring me joy just felt meh. I was convinced that life as I knew it was over. But thing is – the world didn’t stop for me, There were still meals to cook, dishes to be done, a pug that needed to be walked. Life did go on, despite my greatest protests to the contrary.

Gradually, over time, I began to deal with all of the feelings related to a chronic disease. Even though I wasn’t in remission during this time, I started to feel happy, motivated, and excited for life again. I began working out regularly, and, boy, did those endorphins help! I hung out with family and friends, and I started to forget (at least for a few hours at a time) that I didn’t have UC. It didn’t happen overnight, and there were still moments in the day where I would be reminded of my illness, but the difference was that I didn’t let myself wallow in negativity. There was just too much to do, and too much life to live!

4. Reflect, reflect, reflect!

The funny thing about the onset of an unexpected illness is that it makes you look back on all the things you complained about and realize that maybe you didn’t have it so bad after all. Your health is everything – and without it, you truly have nothing.

While my diagnosis was scary, it did ultimately make my a stronger, tougher, and better person because I took those moments of reflection and turned it around to live my life in a more positive way. Sometimes, we don’t know who we are and what we are capable of until we are tested – and it would be a shame to let those valuable insights go to waste. If you’re going through something similar, I encourage you to write down your thoughts and feelings and turn to them when the going gets tough. This helped me so much through the years. 

Even thought these experiences and insights did ultimately help me, I am in no way telling you that you need to pick yourself up immediately and keep going. In fact, I am telling you the opposite. Be kind to yourself. It’s ok to slow down, lay on the couch and do nothing, and cry in the shower just because you need a good cry. I did all of the above and more – and stopped beating myself up about it.

I am definitely a Type A personality, so anything that derails my plans, especially something related to my health that I had no control over, threw me for a loop and rocked my world… and it ended up being ok. Denying the hard feelings will only make them that much harder. Cry, talk, and even work it out! Just don’t let those feelings fester inside. 

If you feel like the world is crashing down around you and you can’t get out of the funk, just know this – one day, you will wake up and your illness will not be the first thing that crosses your mind. Maybe you see will be your child’s smiling face waiting for you to wake up and play, or hear the sounds of a yummy breakfast being cooked. Hell, it might even be a crazy to-do list that makes you bounce out of bed, ready to tackle it. But it will not be your illness, and that I can promise you. Take it one day at a time, and remember: Life will get better, and you will get better! 

8 Comments

  1. I’m still new-ish to my diagnosis (April) but in forums for people who are freaking out about being recently diagnosed, I tell them that we’re playing the long game. That things in the short term might be scary and really suck, but we are making treatment and lifestyle changes for long-term results. Because sure you can skip medication because the potential side effects sound awful, but 15 years from now that might be a giant mistake.

  2. Your timing on this post couldn’t have come at a better time for me. I so needed to read this tonight. My brain always goes to worst case scenario and that has been making me wallow in a big bowl of self pity the last week. Thank you for sharing your journey with UC ❤️

  3. I love this post!! I’m a clinical social worker at a primary care office, and my role is to help people learn how to cope with chronic illness (as well as general anxiety and depression). You made the perfect point about why integrated care is so important, as you truly cannot separate physical and mental health. It sounds like Mal has been a wonderful support and intuitively uses the same techniques for anxiety as many therapists. 🙂

  4. Meditation and trying to stop my brain’s crazy thoughts have been really good for me when it comes to dealing with any worries – big and small. Have you tried this? So glad you are getting through it.

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