Remember that you have IBD, not the other way around. What I mean to say is that while having IBD can feel all-consuming at times, especially when you're in the thick of it, your identity goes far beyond IBD. I know that it sometimes got easy to forget that there was a part of me that existed outside of my Crohn's, but holding on to those parts of my identity that weren't centered on Crohn's were the things that helped me get through the worst times. And then, if/when you reach remission, your identity doesn't feel lost because you have other things to lean into.
You always have a choice, even when it doesn't seem like it. Even when both (or all) options are awful, there is usually always a choice. And there is a lot of power in remembering that you are still in control. The choice between a rock and a hard place is still a choice.
@Katelyn I love this!! It also echo's my son's sentiment that 'the disease doesn't define you. You define you." I've heard him state it to his peers with IBD, especially those that are feeling defeated and lose hope in being able to get back to living their best lives or back to their sports, hobbies, interests and simply being who they are - this is something he learned and has worked at - not giving up on his passions or aspirations, chasing after his dreams and, when needed, adapting to the demands of his disease setbacks and complications while still doing what he loves to do and is important to him.
Another sentiment he likes to share that I love and I believe is inspiring is: "there's going to be highs and there's going to be lows. . .and sometimes the lows can get really really low, but you can never ever lose sight of the highs."
@Liat_S Yes, 100%! The whole point is that it is not your defining feature. IBD is absolutely part of my identity. It has shaped who I am and my view of the world in numerous way. BUT...it's not the only piece of my identity. I am a varied person made up of so many little pieces -- my relationships to others, the work that I do, the things that bring me joy -- and all of them matter. So the important thing to remember when you're really down in the dark parts is that the rest of you matters, not just your status as an IBD patient. I am so glad that your son has realized this and is sharing it with his friends. What a wonderful gift that he is giving to others!
I also wholeheartedly agree with the second sentiment. Those highs are the things that keep us moving forward, and holding on to them in the lows is what can help us ride that wave back upwards. Your son sounds like such an insightful young man. I'm sure you're so proud. 😊
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Remember that you have IBD, not the other way around. What I mean to say is that while having IBD can feel all-consuming at times, especially when you're in the thick of it, your identity goes far beyond IBD. I know that it sometimes got easy to forget that there was a part of me that existed outside of my Crohn's, but holding on to those parts of my identity that weren't centered on Crohn's were the things that helped me get through the worst times. And then, if/when you reach remission, your identity doesn't feel lost because you have other things to lean into.
Care Partner of Adult
Excellent advice, @Katelyn! I love it.
I love reading these. I think a lot of times many in other disease areas can relate!
Patient
You always have a choice, even when it doesn't seem like it. Even when both (or all) options are awful, there is usually always a choice. And there is a lot of power in remembering that you are still in control. The choice between a rock and a hard place is still a choice.
Care Partner of Adult
I am a big fan of this philosophy because you're right; even an unpleasant choice is a choice, and that is part of our power.
@Katelyn I love this!! It also echo's my son's sentiment that 'the disease doesn't define you. You define you." I've heard him state it to his peers with IBD, especially those that are feeling defeated and lose hope in being able to get back to living their best lives or back to their sports, hobbies, interests and simply being who they are - this is something he learned and has worked at - not giving up on his passions or aspirations, chasing after his dreams and, when needed, adapting to the demands of his disease setbacks and complications while still doing what he loves to do and is important to him.
Another sentiment he likes to share that I love and I believe is inspiring is: "there's going to be highs and there's going to be lows. . .and sometimes the lows can get really really low, but you can never ever lose sight of the highs."
@Liat_S Yes, 100%! The whole point is that it is not your defining feature. IBD is absolutely part of my identity. It has shaped who I am and my view of the world in numerous way. BUT...it's not the only piece of my identity. I am a varied person made up of so many little pieces -- my relationships to others, the work that I do, the things that bring me joy -- and all of them matter. So the important thing to remember when you're really down in the dark parts is that the rest of you matters, not just your status as an IBD patient. I am so glad that your son has realized this and is sharing it with his friends. What a wonderful gift that he is giving to others!
I also wholeheartedly agree with the second sentiment. Those highs are the things that keep us moving forward, and holding on to them in the lows is what can help us ride that wave back upwards. Your son sounds like such an insightful young man. I'm sure you're so proud. 😊