Today, I want to share with you a few thoughts that have been weighing on my mind lately. Fair warning – this will be a bit more of a heavier post than usual.
As many of you know, I live with a not-so-fun chronic illness, Ulcerative Colitis. You can read more about my journey with UC here. Most of the time, I feel healthy, strong, and happy, and I will never take that for granted. But, from time-to-time, after a particularly bad flare, disheartening doctor’s appointment or just trucking into Boston every 9 weeks for an Entyvio infusion, thoughts creep into my head.
“I hate being a “sick” person.”
“Other people don’t have to deal with this.”
“I’m different than everyone else.”
Once they get rolling, these thoughts will follow me everywhere: during a pug walk on a bright sunny morning, at Whole Foods picking up groceries for the week, at a fun happy hour with friends, laughs and all. I sometimes feel like I’m wearing a mask; on the outside, I look like I’m doing great, but internally, I’m struggling. Some of you might also suffer from a chronic illness, and you know these thoughts all too well. Even if you don’t, we all go through periods of feeling different and wishing that we had it as easy as someone else, so I think this post will resonate with many of you.
My doctor once told me “Your normal is not normal” and truer words haven’t been said! Living with UC can sometimes feel like living on a roller coaster – there are high highs and the very lowest of lows. That unpredictability makes me feel “not normal.” But just because my normal isn’t the same as the next person’s doesn’t mean that I shouldn’t strive to find joy, even in the most difficult of times. And neither should you!
Below are three mantras that I find sticking to when the going gets a little tougher than usual:
Remember where you were and where you are NOW
Throughout my UC journey, I’ve gone through several flares and remissions – que the “roller coaster” feeling. The good days are great, and the bad days can be, well, pretty bad. I always take a moment to remind myself about the first time I experienced a flare – when I had no idea what the heck was going on with my body, and just wanted answers. Now, several years later, I know I have come so far with treatment, and generally understand my body so much better. By no means do I enjoy having a chronic illness, but I have to ask myself – if I didn’t suffer from UC, would I know my body as well as I do now? Would I be making the same effort that I do now to treat it as best as I can? In its own way, chronic illness has given me valuable insights into my body, and it’s prompted me to make positive lifestyle changes to feel my best. It’s given me the opportunity to share what works and what doesn’t with all of you, and that part I would never take back.
Don’t give up and don’t beat yourself up
When I was really “sick,” it was so frustrating and overwhelming and that feeling made me want to stay in bed all day and just forget any plans I had to work out, meal plan, or hang out with loved ones. (I guess this is where having a 3 year old helps – he gives me no choice but to squash those ugly thoughts and get going!) Even now, when I don’t feel well, I try to remember that it’s just that – a feeling, and feelings aren’t always reality. The best cure for a crappy mood is a really good sweat, and I know if I get up and moving, I won’t regret it!
That being said, if I am truly experiencing a physical side effect that makes exercise feel unpleasant, I will definitely not work out and take a rest day, whether planned or not. We should never feel forced to work out if it doesn’t feel right or causes pain (life is hard enough!). We are all doing the best that we can, and sometimes my “best” looks like curling up on the couch with a mug of tea and a good book. Tomorrow, it might look like a 5:15 AM CrossFit class where I crush the WOD or, hey, I skip that same class for an extra hour of sleep. It’s important to listen to our bodies, especially when dealing with a chronic illness.
Count your blessings
Sounds cliche, but hear me out. We don’t know what a pure privilege it is to be able to wake up every morning, spend time with the people we love, and find joy in movement until we can’t anymore. I have a wonderful support system of family and friends that hold me accountable and give me a gentle nudge when I’m getting in my own way by feeling sorry for myself. Without my “tribe,” fighting a chronic illness would be significantly harder. If you have a similar support system, don’t hesitate to lean on them. Reach out to your family and friends and tell them how you feel. Sometimes just the simple act of talking and getting all those overwhelming thoughts off my chest makes me feel 100 times better, and gives me the boost I need to accomplish what I need to that day.
If you are battling a chronic illness, whether newly diagnosed or a veteran trooper, just know that you don’t have to go it alone. It’s ok to reach out and say “I need help” just like its ok to say “I need a break” if you’re not feeling well. And when you’re ready, pick yourself back up again and keep trucking along.
The good times will always outweigh the bad, so squeeze the heck out of them. UC is just one blip on the wonderful journey that is my life; it doesn’t own me nor does it define me. When I start feeling like I am “different” and not “normal,” I just remember – everyone is going through something. I am not alone. And neither are you.
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