From Jesse: This week I am excited to introduce you all to my amazing husband. Funnily enough, his name is also Jesse. Yes, we are Jesse & Jesse. We’ve been married for almost four years and have been through a lot of growth and change together during that time. So I wanted to take a few moments to talk with him about how chronic illness affects him and his perspective on how it affects our marriage. I hope you guys can find some helpful information in his words today.
What blessings has chronic illness brought to our marriage?
I would say that the biggest blessing to come to our marriage has been being more present with one another and in our life together. Since the road ahead of us isn’t as clear as it may be for someone without chronic illness, we have to plan for our futures but also expect the unexpected. We just don’t always know how your disease will be in the future. So that has really forced us to be present with one another because we never know what’s going to be next in our journey. That’s the best blessing for me because I’m always thinking about what’s next, but with this [your disease] you just can’t always be thinking like that.
Another blessing would be unpredictability. Your disease has made the trajectory of our life unpredictable, which is kind of fun. For instance, you’ve been feeling so much better lately. For me, that’s been really fun because I didn’t think that would ever happen. There’s fun surprises within that unpredictability and through it we get a richer experience in life because it requires us to really rely on God and not on each other or ourselves.
On the flip side, what challenges has chronic illness brought to our marriage?
In the same vein, unpredictability can also be a challenge. It can be hard to plan for things like having kids, moving, and vacations because it can feel disheartening sometimes not to know for certain that you’re going to be feeling okay.
Practically, the other challenge has been finances, only because chronic illness can be expensive despite being an obvious worthy investment. So it’s required us to be extremely strategic with our finances. We spend more on health and wellness than the average young couple, so we just have to prioritize our spending. I rationalize it in that most people our age spend as much money on dining out, fast food, impulse buys, and things not investing in their health that we do on things that invest in not only your health, but mine too.
What moments or issues have been the most challenging for you personally?
It’s really hard for me to watch you be scared and have literally no power or control over it. I think about your most recent colonoscopy when you were feeling nervous and worried about the results. I sat in the waiting room and just prayed the whole time because I felt like it was all I could do. There are a lot of elements of your disease that we can’t control, so I feel helpless sometimes.
Just being there to listen and not having a concrete task to do to make you feel better can also be challenging. In my experience, when someone is struggling I feel like I have to do something productive to be helpful. But with chronic illness, often the thing you need me to do is just be there and listen to you, which is hard for me sometimes because it’s not as concrete as doing a physical task.
What was it like for you to decide to spend your life with me, knowing that I had a severe chronic illness that would affect our life?
It was a literal non-issue. I never thought about it once and I still don’t think about it as being an issue because I knew we would figure it out and we are. I knew from day one I wanted to spend my life with you and, since your disease is part of you, I embraced that.
Has watching me deal with my health and the way I eat changed the way you think about your health and the way you eat?
YES. I have learned so much about healthy eating and sustaining a healthy lifestyle. I have a fair amount of chronic illness history in my family, not to mention having to take a Type II diabetes test in college. So, watching you take control of your own health trajectory has really motivated me to stay devoted in taking my own health seriously. Watching your transformation has inspired my own transformation in my eating habits, mindfulness, exercise, etc.
It’s also given me an appreciation for real food. I grew up eating boxed everything all the time and only ever ate to survive. Now I actually eat for enjoyment and taste. It feels like a gift.
Do you have any tips for other family members who have loved ones with an autoimmune disease?
Try to put yourself in their shoes, no matter what. If you’re eating at a restaurant and the waiter puts a basket of bread on the table that your loved one can’t eat, just don’t eat the bread. Be aware and considerate. If they’re energy levels are low and they’re not feeling like doing much but you wanted to go out, try to reframe and do something at home instead. Be accommodating of their energy and mood.
Don’t be hard on yourself when you can’t fix it, because sometimes you can’t and the best thing you can do is just be there for them. I feel helpless some days, and I used to be really hard on myself and question my worth when it comes to taking care of you.
Try to enjoy your loved one’s chronic illness and turn it into a positive experience, because you have to if you’re going to support them.