Do This With Me
A HOW-TO ON WALKING WITH A CHRONICALLY ILL PERSON
Happy World IBD Day, friends! And happy 4th birthday to Passey, my J-pouch!
Each year, on this day, I do some sort of something related to education and awareness of IBD. It is a privilege and honor to both celebrate and advocate on this day. I celebrate the freedom of an ostomy bag and now a J-pouch. I celebrate the ability to thrive despite a life-changing diagnosis. I celebrate the medications that offer hope of remission, and I celebrate simple little milestones that signify steps towards health.
I advocate for the visibility of those living with IBD. I strive for better and more inclusive policies that protect and provide for the chronically ill. I promote education and correct stereotypes, misinformation, and false concepts of the diseases I have been diagnosed with and currently live with.
This year, I want to celebrate those who have walked alongside me well. I want to encourage healthy folks to live alongside chronically ill persons better.
If you are reading this piece, you have a chronically ill person…me! And I am so very honored to be your chronically ill person😊 Take a second and think about all the other people you have the privilege to live life with…do you claim any other chronically ill people as friends or family? If so, keep them in mind, too, as you read through this!
This year, instead of an educational medical lesson about what IBD is and what it isn’t, I want to talk about what life alongside an IBD patient could look like. I want to chat about how you can care better for the chronically ill persons in your life – what that practically looks like; what not to say; good questions to ask. I want you to walk away from this piece and this #WorldIBDday equipped to care for and love your chronically ill people better.
So here we go!
This is the easiest realm to see and the easiest realm for you to reach into. If you are new to chronically ill people or just not sure how to interact with a struggling person, work on noticing and interacting with this piece first. If you are at a loss of where to start, start here!
Begin with recognizing that we can look healthy and be sick at the same time. I know the tension is hard to grasp, but trust me – that is absolutely true! I may look great, but internally, I may feel like I am dying. I may look put together…notice that limp, though…that Crohn’s muscle stiffness is real. Don’t assume someone is healthy or fine because they look that way.
This next one seems like a no brainer…and yet…it must be mentioned. Don’t comment on our weight, please. Good Lord, friend, if you are commenting on anyone’s weight, we need to have a different conversation! Weight loss can indicate we are not well. Weight gain can indicate we are not well. Weight just shouldn’t be a part of the conversation. Period. Please note that comments on how cute my outfit is will be appreciated any day of the week, regardless of how I feel!
Be teachable! Acknowledge your ignorance and humbly ask your chronically ill person if they are up to answering some of your questions. Only after permission is granted do you voice your curiosities. Seek to learn from their experiences and do some of your own research, too. Be inquisitive about the differences our lives present in contrast to yours.
Remind us to be confident in the treatments we are on. Medication is a hard and tricky thing for many patients, me included. If my current medication doesn’t work, there is only one more I can try. Only one. Believe with us that this medication is working. Prompt us to recall that science is ever-changing, and there will be more options. Your willingness to inspire belief in the treatment course we are on is so sweet. Don’t cast doubt.
In that same vein, don’t suggest natural remedies or diet changes as a “cure” or “fix” for my disease or my symptoms. Ask what all my treatment regiment includes. Do I know what my food triggers are? Have I found things in addition to medication that help alleviate my symptoms? Ask if we have dietary restrictions. Embrace a holistic view of wellness that doesn’t demean the preference(s) your chronically ill person is choosing.
And serve your chronically ill person! Make them dinner. Do their chores. Offer to do their laundry or go to the grocery store for them. Sneak them a safe treat or have flowers delivered to their door randomly. Understand how draining and difficult travel can be and do your best to make that easier – come to us, let us nap when we arrive, bring a meal when we return home. You have the ability to take things off our plate, and your willingness to do that loves us so well. You have the power to make us smile on really hard days, and happy tears are a welcome change.
Believe it or not, you may play a vital role in the mental health of your chronically ill person. This may sound daunting, but I promise this is a do-able category. If you live at a distance, this may be a very sweet way to love on your chronically ill person!
When doing life alongside us, check in often. Pick a Tuesday and send a text. Don’t wait until we have publicly shared to reach out. Love us in-between posts and videos and health updates. Call and see what we are doing and how life is going in the mundane. Oftentimes, hard moments happen in the in-between. We need you most then.
Give us space to process at our own pace. Respect when we don’t want to or need to share things with you. Respect our boundaries when we graciously say we don’t have the ability to talk about it or answer questions. Just let us know you are there when we are ready and you have a hug ready right now.
Invite resilience into our lives. Remind us that the flood of unknowns, overwhelming emotions, and consuming thoughts is okay. It is normal. Prompt us to focus on adapting despite the awful circumstances. Acknowledge that it takes time, and that is okay. Speak truth into our lives – this does not determine the outcome of life. This does not write the end to our story.
Encourage endurance. Bearing the pain and hardship alone is terrible. Support us by doing it with us. Sit with us while we wail over what we have lost. Embolden us to persevere despite the stress and the fatigue and the constant uncertainty. Stand with us as we re-discover life and find a new normal. Cheer us on!
It may sound incredibly basic, but let us cry. Life can be so incredibly hard…let us cry. And should you be so inclined, cry with us! We can always find more tissues, and re-hydrating with a friend is always preferable.
Don’t skate over or sugarcoat the hard and shitty. It is IBD - life is full of shit. Dig in. Make poop jokes with us. Laugh at the bathroom humor, and use it to relieve hard moments. Find the comedy, and live in the moment. Buy your IBD person stuffed organs to replace the ones that are dead or have been surgically removed. Help your chronically ill person name ostomies, colons, pouches, and any other various problem organs needing to be yelled at. Develop a code with your chronically ill IBD pal…one that keeps their dignity intact when they yell at you in a public bathroom for new pants and a diaper because they didn’t make it to the toilet.
Your definition of health is probably vastly different than the reality of that definition I live with. Please don’t push your definition or expectation of “health” or “healing” on us. That is so hard, friends. Ask me what health looks like. How I define healing in light of my diagnosis and my treatment options. Celebrate with me when I hit those milestones!
And realize “health” may not be the final goal for a chronically ill patient. Honor our journey, instead. Know this is a long and arduous voyage, and admire how we have chosen to walk our respective paths. See our attitude and inspire us to continue walking it well despite everything.
While you may struggle to understand what life looks like for us chronically ill people, that does not mean you cannot care well for us. You may not understand our experiences, but that doesn’t mean you cannot walk with us.
Our diagnosis changes, grows, and stretches us. It gets to do those things to you, too. Let your chronically ill person re-define things, reveal your blind spots, and teach you to live life better. Embrace a new perspective and thank your chronically ill person for demonstrating how to love others more deeply and more richly.
On this World IBD Day, commit to loving your chronically ill people better. Celebrate our ability to show up. Recognize unreliability as a symptom, not a character trait. Rejoice with us when we take a shower and don’t need a nap. Be compelled to hear them and see them more clearly. Resolve to do the hard everyday with us. Don’t shy away from the gross and the uncomfortable.
Grow in grace. Develop patience. Show love. Walk with those who are chronically ill. I promise you will be better for it.
I cannot thank these people enough – Glenn, Kayla, Kendal, Lindsey, Maria, Rachel, Reagan, Ryleigh, and TR. Thank you for showering me with a love I have rarely experienced before and reminding me that people can and do come alongside those who are chronically ill.