Quality of life and IBD: How to discover yours and not let go
Last updated: April 2020
What does quality of life mean to you? As someone who was diagnosed with Crohn's disease nearly 15 years ago, it feels like a loaded question. Quality of life is everything to me. But, when you're given a diagnosis for a chronic disease without a cure, regaining quality of life can feel like a constant uphill battle. Quality of life means different things to different people. Here's what it means to me.
What quality of life with Crohn's means to me
Quality of life means waking up each morning and being able to take on the day, despite my illness.
Quality of life means getting to be a mom, and be present to my children, even though I have IBD.
Quality of life means sharing unforgettable, love-filled moments with my husband, even though I once felt unlovable.
Quality of life means being able to have a career and work full-time or part-time, depending on what works best for me.
Quality of life means feeling a bit more in the driver seat rather than a passenger when it comes to my own well-being.
Quality of life means being able to travel and experience the world around me, without my disease holding me back.
Quality of life means looking at the risks of medications, surgery, and treatments, and being able to see the benefits.
Quality of life means going to bed at night and feeling confident in what tomorrow may bring.
Quality of life means getting to live in the moment and not feel overwhelmed by my next setback or flare-up.
Quality of life means being able to celebrate some normalcy amongst the uncertainty that is life with chronic illness.
Quality of life is looking in the mirror and feeling empowered by who I see looking back.
Life changes to improve quality of life
Life with Crohn's or ulcerative colitis can quickly rob us all of our quality of life. It's a precious part of who everyone is, no matter who you are or what you face. There are so many unknowns and so much pain that comes along with this disease, that often we may feel we're struggling to stay above water.
It's in those moments that we make sacrifices and discover what we need to do to improve our quality of life. It's when we recognize a change is necessary. It's the time we pause and think, maybe it's time to start a biologic, despite the side effects.
It may be time to broaden our care team if we feel like we're not being heard or understood. It's standing up for what you need and using your voice to make a difference for your care. It's advocating for yourself and communicating with those around you when change is necessary.
Crohn's can change a person's life for the better
Once you gain your ground and feel like you have a solid quality of life, you'll feel a better sense of who you are in your patient journey and all that you're capable of. You may stop resenting your disease and instead see how it's changed you for the better as a person.
When you have quality of life, you get a taste of that invincible feeling we all took for granted prior to ever being told we had a chronic illness. If you're reading this and you feel your quality of life is lacking or needs improvement, take a step back and pause.
Reflect on what's holding you back and what your goals and dreams are. Talk with your physician and share those goals are and how you plan to achieve them. Quality of life changes with each stage of life, evolve with your disease and do what you can to make your days happier and more joyful. Improving your quality of life may be the medicine you've been needing, but been missing, all along.
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