IBD and loved ones
Disclaimer: If you are reading this and dealing with ANY health related problems I am NOT recommending you take the same unconventional approach as I have in my battle with Crohn’s disease. Any changes you wish to make in your care plans should be done in partnership with the team of qualified healthcare providers who treat you.
How does IBD impact those around you?
IBD is a painful disease, but the pain isn’t always physical. The emotional toll of IBD is sometimes worse than the physical one. It extends beyond our own bodies and into the world of those around us. Kids, parents, family, and friends all see the pain we go through and because they love us they are impacted too. They might not always know exactly how you feel or what to say to you during difficult times but even an inadequate response is a sign that they care and are concerned.
As people with IBD we have two options for how we engage those we care about: 1) We can shut down, block everyone out, and try to fight this disease alone (something I tried for a long time) or 2) give in to the reality that life is messy and it’s ok to be vulnerable with those who care about you - they want to be in the mess with you. (yes as crazy as that might seem!)
In this post I wanted to acknowledge these amazing people who support us every day - not so we feel like a burden - but instead to ensure we praise them for the sacrifices they make for us every day (something I need to do a better job at). And what better way to do that than to introduce you to my biggest support system - my wife.
Kiran and I started dating just a few weeks before my first symptoms with Crohn’s disease (talk about bad timing)! If the vomiting, puss filled welts, and diarrhea weren’t enough to scare her away, then I knew I had a keeper. (ha!) We dated for almost three years before we said “I do”.
We recently spent a little time looking back on the last 20 years, both the good moments and the bad. The following is her perspective on the journey so far. We hope this post reminds us all that IBD is hard for everyone and it’s ok to admit that even if you aren’t the one diagnosed.
What has it been like living with someone who has a lifelong incurable disease?
“It’s been heartbreaking. It’s hard watching the person that you love struggle so much. You feel like an outsider, like you are helpless to do anything that really makes a difference. And well… then there’s also the guilt. Guilt that I should be doing more to help you and guilt that I get disappointed when plans change or we can’t enjoy life together to its fullest. I know you are the one actually living with IBD, but I have guilt when I think about how your IBD affects my hopes, dreams, and plans for life. And I think most people who care for others with a chronic condition feel alone in that guilt.”
“I still remember your hospitalizations very clearly in my mind. You had gone to bed early since you weren’t feeling well, and I was in the living room watching TV and working on my computer. I heard a loud thud and my first instinct was that one of the kids had fallen out of bed, so I ran upstairs to check on them - but both were ok and sleeping soundly. Then I heard the 2nd loud boom. When I ran in and saw a trail of blood leading to you lying ghost pale on the floor in a pool of blood, I panicked. I still remember once the paramedics arrived they had to tell me that I needed to calm down because I was hysterical from the shock of it all - I mean I saw you unresponsive, lying there on the ground, eyes open and gasping for air, but it was like you didn’t know I was there. There was so much blood everywhere. I remember grabbing your face and calling your name but nothing! I felt guilty that I wasn’t there to stop you from passing out that 2nd time.”
“In the hospital I watched you passed out many more times and lose so much more blood. It was so scary! I remember when the doctor said he was going to release you from the hospital and I begged him to promise that this wouldn’t happen again because I didn’t think you could handle it and I couldn’t either. The morning after your release, that exact incident happened again and we were off in the ambulance once again. It was terrifying and I just couldn’t believe it was happening again! Once we got home from the hospital, I was afraid to leave you alone in case it happened again. I still feel guilt sometimes for having PTSD after the trauma because they happened to you - not me. I just walked into it, but I just can’t get those images out of my head.”
“But even with as hard as this journey has been on both of us, I still want to be there with you in it. I don’t want you facing this challenge alone! I feel like you appreciate me more when you let me in.”
What do you think this journey has taught you?
“Looking back on it, I think this journey has taught me a lot. I’ve had to learn to be more supportive and understanding of what you are going through even though I don’t live in your shoes. I’ve had to learn to trust you when you say “I can’t eat that” or “I don’t have the energy to go out tonight” and to trust what your body is telling you.”
“Probably the most important lesson we’ve learned though is just to take advantage of those times when you are healthy. Be grateful when you have health. Be grateful for how far you’ve come. Never stop hoping and praying for a better life! And take any opportunity to travel and adventure together that we get!”
“Because you are so interested in how things impact your health I’ve started to watch how certain foods affect me too. I think our journey is going to make us stronger and healthier as a family as we age (gracefully, I hope, ha ha) and teaching our kids at a young age about nutrition will be invaluable for them as they grow up.”
Update: November 2023
I'm incredibly grateful for my wife and my parents for all they have done for me over the years. They chauffeured me to colonoscopies, sat with me in waiting rooms, pleaded with doctors on my behalf, changed their eating habits for me, and chose to sit with me in my moments of weakness while others were living their lives to the fullest. Most importantly however they prayed for me when I didn't have the strength or the words to speak. God heard their cries. Grateful.
Original note:
I am not always easy to live with. When I don't have energy or don't feel well I can be cranky, depressed, or just plain boring to be around. The people closest to me get to see those ups and downs every day. So, if you are lucky enough to have those people in your life that fight for you even when you don’t fully understand why - hug them a bit more; thank them a bit more; and spoil them a bit more. Because you are blessed. :-)
It’s important to remember that our loved ones are just as much in this journey with IBD as we are. Their emotions, thoughts, feelings, and guilt are just as important as the person with the diagnosis.
IBD can be hard with or without a support system. There are good people in the world who want to be a friend. Get connected with a counselor, community center, gym, book club, volunteer with a local charity, or even find a group at your local place of worship. Find like-minded people who are going to accept you for who you are. Even get involved in a support group through the Crohn's and Colitis foundation. I'm involved in my local chapter. It helps to know you aren't alone!
