Dear Olivia: An Open Letter to My Fellow Patients

This letter is for you, whether an IBD or other chronic illness patient, a caregiver or family member, a friend or a loved one. My journey as a patient has been a whirlwind, especially since moving to college. Learning to trust and depend on others has never come easily to me, but as I delve into the depths of what love and trust means, this is what I know and believe patients deserve to hear.

Dear Olivia,

I want you to know that you’re not a burden. You will never be a burden. You are a beautiful you, every inch of your body, sick and healthy alike. Every single person in your life who cares for you and asks how you’re doing isn’t doing it begrudgingly, and you shouldn’t ever feel guilty for their kindness and helpful hearts. These people consciously make a decision to help you. Every time someone asks you if you’re doing okay, every time someone comes over to hug you when you’re in pain, every second someone spends with you is intentional; they make the decision to choose you each and every time.

I want you to know that you don’t have to apologize to anyone or for anything. Dispel that guilt and turn it into gratefulness and humility. For every “sorry” that your brain may think, let “thank you” be the words that your lips may speak. Don’t apologize for being “burdensome” or “weak.” Don’t apologize for “limiting” your friends or family. The best thing you can do, both for them and yourself, is to simply accept their love with a smile and a “thank you.” Thank them for choosing to spend time with you. Thank them for the fun you have together. Thank them for their presence in your life.

I want you to know that people can and will love you not despite your disease, but perhaps even because of it. You are stronger than you think you are. Yes, your body may be vulnerable, but out of vulnerability comes strength. Out of pain comes resilience. Don’t let anyone ever tell you that you’re worth less because of your disease. When I look at you, I see a goldmine of value. I see a gem of a child that is blossoming into an beautifully strong and independent person.

I want you to know that saying no to others’ help is okay too. Your independence will be understood and should be cherished. Yet, don’t ever feel forced to push others away in order to assert or prove this independence. I know that you’re strong and can get through it on your own. Others know it too. Sometimes, it’s okay to let someone hold your hand, not to help fix you, but to be there as you fix yourself.

I want you to know that your low spoon count is not a bad thing. “Sick” is not always a curse. It is a blessing: it forces you to slow down and be intentional about how you spend your time. It’s empowering; it gives you the power to choose how to expend your energy. Remember: one of the most special and valuable gifts you can give your loved ones is one of your last spoons by choosing to spend time with them; I know they’ll appreciate it as much as you appreciate them.

I want you to know that if and when you’re ready to celebrate your sickaversary, I will rejoice with you. I will mourn your loss of health with you, I will praise your renewal of strength with you, and I will reflect on your journey as a patient with you. I will do this for you, just as any one of your loved ones would too, because you deserve to know how much you are loved and just how valuable you are.

Love always,

Amy