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.
Thank you for this! I was just recently diagnosed with Lymes and 2 other chronic issues. My body is just not cooperating right now and it’s been very discouraging. I’m a personal trainer so health and fitness is my life and it’s hard for me to stop and realize don’t push it just rest. This was very timely for me and I appreciate you sharing!!
Thank you so much for this post Tina. I have an autoimmune condition that *touch wood* right now is in remission thanks to an amazing drug. It’s hard not to beat myself up about having it in the first place even though it’s obviously not my fault. The first 3 years when I was undiagnosed and in so much pain were terrible and now I often forget I have it bc the medication works to well. Thank you for these gentle reminders!
Living with chronic illness can feel like a very lonely world. Thanks for writing about your experience.
This resonated with me as far as mental illness (mood, anxiety and severe adhd). Why is everything so much harder for me? Thanks for the post, we all go through something!
What a wonderful reminder. Although I don’t have a chronic illness, this post rang true with me. We are all trying our best and we all have good days and bad days. Give yourself and others grace and it will make the world a better place. Thank you for this reminder and as always, for sharing your journey!
My husband has a chronic illness and it is HARD for him. Was super healthy, ate well,exercised and took care of himself. He taught me self-care. One summer he was riding his bike and he coudn’t breathe. Odd, he rides for miles… Long story short he has heart disease. WHAT? how is that possible when he is so healthy. Simply, he was born with it and if he hadn’t been so healthy it would have showed up earlier in his life.
For a man who rode his bike 50 miles a day to some days lucky walking down the driveway, it’s been hard. He never knows when he will have a good or bad day and it can be hour to hour. It’s heart breaking to watch and some days it just down right sucks as to how unfair it all is.
Thank you for writing this . I also want people to know how hard it is on the caregiver. You feel so helpless and recently I just realized I have a lot of anger around this. I am envious of other people’s ” Normal” marriages. Chronic disease affects everything. What you eat, what you can do or cant do, cancelled plans at the last minute, sex life, vacations….
My advice is to get support. My husband wouldn’t let me tell anyone he had anything wrong for 10 YEARS. I worried alone, waited in hospitals alone, waited for test results alone.. Very isolating. He finally told most people and it has been a weight off my shoulders to have support. Talk about it with people who understand. Many won’t because they just don’t. Go to a support group with people who have that particular illness.
Thank you for sharing your journey with us and for posting this! My daughter is only 14 and was diagnosed with UC more than two years ago. To say it has been a roller coaster is a huge understatement. After three oral medications failed to manage her symptoms, she started on a biologic about a month ago and is finally showing some signs of relief. It is impossible for someone without IBD to understand what we have gone through and why we decided on the medication we decided on. THANK YOU for bringing awareness of UC and for being so honest about your experiences.
As someone with a couple chronic conditions that flare up sometimes it’s important to keep these in mind!
I heard someone say yesterday, “Some days, life just has to win. It’s OK to just decide today isn’t your day, do whatever makes you feel OK, and try again tomorrow.” So silly, but it really was a nice way of thinking about a lot of things going on in my own life and I’d imagine some of your struggles, as well.
Unrelated: are you going to address any of the comments on Katie Lyn’s guest post the other day about CrossFit? I didn’t comment because so many of the other commenters articulated my opinions very nicely, but I was surprised you didn’t weigh in, since it is your blog and the general tone seemed pretty at odds with what you’ve conveyed your general platform to be (e.g. workout to get stronger, not to look better; no one else should define your standard of beauty; etc.) But, maybe it’s not so off, as far as you’re concerned…?
Thank you for this post- it’s spot on! I very often feel down on myself and it’s so hard to get out of the funk sometimes. Sometimes I just wish for one day that I don’t have to think about my UC! But I know I”m stronger because of it, both physically and mentally. I wish others would know and understand what it’s like though! Thanks for being so open with your struggles and victories, it truly helps!
Thank you for sharing! I always remind myself that everyone has something that they’re going through and to be thankful for everything you do have!
This post came at a great time! I have endometriosis and am having a flare-up currently, so I have been feeling incredibly down on myself. I’m trying to remember to keep going and to be grateful!
My boss’s daughter has UC and is 16, they are actually talking about removing her colon. I hear UC is so painful so I sympathize with you! Feel better!
As somebody who deals with depression, anxiety, and digestive issues herself, these thoughts are so critically important! And this post couldn’t have come at a better time since I recently had to speak with my professor regarding my performances in class and being sick. There is nothing wrong with meeting a little extra support, and there’s nothing week about admitting to it! Thank you so much, Tina this is been my favorite post all month from you.
It is so amazing when we can share our struggles and triumphs and help others. Positivity and optimism is key and you are such a great example.
Thanks for the reminder girl! I deal with a chronic injury that makes it difficult to sit, sometimes worse than others. You are 100% right when you described those thoughts taking a hold of you so many places. Thanks for the reminder that we all have things to deal with, it’s our choice to maintain positivity as much as possible!
Thank you for posting this. ❤❤After my son was born I was diagnosed with an incredibly rare autoimmune disease that basically attacked my pituitary gland. I remember going to an endocronologist for a second opinion and he said “you never want to be an interesting case when you come to the doctor and you my dear are a very interesting case”. I remember I cried all the way home for that appointment, but you just have to learn your new normal. I’m also a registered dietitian and initially it was really hard to accept the diagnosis because as dietitians we are taught, and we preach, that if you live a healthy lifestyle that you won’t get “sick”. Having this autoimmune disease has taught me to have more compassion for my patients and also give myself more compassion too.
Big hugs to you!
I was dx with UC around 27 years ago. Your comment on sometimes feeling like you have to wear a mask….- that definitely resounded with me. Prayers 2 u the med regimen you are on now continue to work well for you.
As a health/fitness buff as well, being ok to give in and not work out when body just can’t/shouldn’t do it is hard- the older I get though, the wiser I am about it!
Thank you for this post! Your UC posts are so so helpful to me and I’m sure many others that often feel alone in chronic illness. You help me feel understood and it’s always better to hear an individuals experience rather than random internet searches. Thanks so much for continuing to share your story!
Hi Tina, thank you for this post. I started having migraines in December and over the past month they’ve gotten worse. I recently went on a new medication to help with prevention, but it takes time for the medicine to kick in. I’m learning to be patient with myself and to accept when I don’t feel well enough to go out. I try to remind myself that I’m strong because I’ve been able to go to work every day even with chronic pain. Thank you again.