Today is the last day of Crohn’s & Colitis Awareness week and concludes the last post in this mini-series. With that, I wanted to save the best for last – the people who take care of me when I can’t always care for myself. They are my silver lining, each and every day.
Charlie and my parents are my 3 main caregivers, but certainly not the only ones. Oftentimes, they tell me how much they hate seeing me go through this. I always tell them that I worry about them too because I’m not the only one going through it. Sure, I’m the one physically suffering, but watching someone you love suffer takes a really big toll on you.
So to bring this week to an end, I want to honor the people that selflessly care for others. This was inspired by an absolutely incredible opportunity that Charlie and I recently had. For those of you who may not know, Charlie works for Johnson & Johnson. Tylenol (a Johnson & Johnson brand) recently launched a campaign (with the help of my kick-butt marketer of a husband – he’s so cool!) called How We Care.
The whole campaign is geared towards caregivers because they’re such an important and special group of people that are overlooked way too often. What’s incredible is that Johnson & Johnson wanted to extend this campaign and honor people within their company that are caregivers – people like Charlie. So, Charlie and I had an amazing opportunity to sit down with Tylenol and share our story of what life is like for both of us living with this disease.
I’ll share our video with Tylenol at the end of this post, but before I do that, I wanted to talk a little more in depth with Charlie and my parents about what it’s like to be a caregiver for someone with a chronic illness like Crohn’s Disease. Even though I’ve always known that they have struggles of their own, I’ve honestly never sat down and asked them what those struggles were until now. I hope that their answers will also help those of you who have caregivers understand a little more about what they go through. I also hope that any caregivers out there can relate and find some comfort in knowing you’re not alone.
What is your biggest emotional struggle in caring for someone with a chronic illness?
Charlie: The helplessness I feel sometimes when you’re sick. It’s hard when there are no answers and when I have no ability to help you but want you to get better.
Mom & Dad: As a parent, you want to fix what’s wrong and this was something that couldn’t be fixed. It broke our hearts to watch our child struggle and suffer with a disease we knew so little about. And we couldn’t take the hurt and pain away from you. Had we been able to take that away from you and carry it ourselves, we would have gladly done that 1,000 times over.
What is the most stressful or challenging part of caring for someone with a chronic illness?
Charlie: The most challenging thing is learning to be adaptive in plans. Sometimes you think you have things planned out and Crohn’s can quickly change those plans.
Mom & Dad: There are several stressful things and I’m not sure what the worst is. For one, I always wanted to take care of you but, at times, I smothered you in the process. For that, I’m truly sorry, but my heart was in the right place. I had to learn when to step up and when to back down. And I’m still working on that. I also had to learn how to deal with all of the changes that you were dealing with. Depression was the one I was most worried about stressed over. And of course making sure you always had your medication, because it was so expensive.
What is something that gives you peace of mind or one way that you find comfort in dealing with caring for someone with a chronic illness?
Charlie: Being a part of things is really important, like knowing what your doctor has to say. I always feel so much better when I know your doctor says she isn’t worried.
Mom & Dad: We have tried our hardest to help you deal with this horrible disease. I think we’ve always been there for you. That gives me peace. But the most comfort comes from knowing that you truly appreciate all that we have done.
What is the most rewarding part of caring for someone with a chronic illness?
Charlie: Being able to celebrate health and having a better appreciation for our health. It’s something that so many people take for granted and I love how much I get to enjoy seeing you on your great days!
Mom & Dad: It’s rewarding to learn so much from you. You have this horrible disease but you take it and make the best of it without wallowing in self pity. We’ve watched you keep going when you could hardly put one foot in front of the other. You have NEVER used your disease to get ahead or to get out of anything. The most rewarding thing is that I want to be like you.
What is something that I as the patient can do to make things better for you (be it emotionally, educationally, etc.)?
Charlie: It’s helpful for you to always let me in, even when it feels like I can’t understand. I know having a chronic illness can feel very isolating at times and feeling like I at least know what you’re feeling helps me also know how I can either help, give you space, or whatever you need.
Mom & Dad: Something you can do to make things better is to always talk to us and always be honest and open. Let us know where you are with things. And have patience with us when we get on your last nerve. 🙂
First off, thanks a lot for making me cry you guys, ugh. 😛 Second off, they make me sound way tougher than I actually am. But I think that just goes to show how humble and giving they are. I’m insanely blessed to be loved and cared for by such wonderfully incredible human beings. It makes my heart want to burst sometimes, I swear.
To my husband who drops what he’s doing at a moment’s notice when I call him to tell him something’s off and I’m terrified, to my mom who drives 9 hours and sleeps on an air mattress for 3 weeks so that Charlie can go to work and I can have someone there to look after me, and to my dad who always knows exactly what to say and exactly what soup to get me after a colonoscopy… I truly don’t have the words to thank you.
Caregivers are pretty incredible people, you guys. Crohn’s sucks sometimes, but I can’t begin to tell you the lengths that these people go for me. And I know it’s not fun for them, there’s no way it possibly could be. But they’re there through every high and every low. And that’s why I want to end this week talking about them, because I literally, truly, and honestly couldn’t do it without them. They’re my heroes. I love you guys.
Now, everyone, go hug someone who takes care of you because… well, they deserve it! And, uh, if you’re wondering if I’m crying right now, the answer is duh. 😛 Thank you guys so much for reading and putting up with my incessant advocacy this week! 🙂 I hope it’s been informative, comforting, relatable or just something that you may have needed to read! And of course I hope that you’ve enjoyed it! You guys mean the world to me and support me so much and it’s an honor to be able to share so much with you! Thank you!
As promised, here is our video with Tylenol. I wish I could put the video right here for you guys to watch, but it’s only on Facebook so I’m not able to. But all you have to do is click this link (and have a Facebook account) to watch it. This was such a special experience and I’m so honored and thrilled to share it with you all!
Here’s one more photo that Charlie and I took during our time shooting the video. It’s just a selfie, but it’s such a special memory and therefore one of my all time favorite photos of us. 🙂