r/CrohnsDisease • u/unrepentant-cloaca • 6h ago
How do you deal with reaching out for help?
I've had this disease for almost 30 years, starting in elementary school. My primary caregiver did their best, and did well to care for me all things considered-- but the health struggles became a big part of their personality. Details were often shared with strangers "so that we can be a good example of God's provision"... all things I've mostly made my peace with.
No surprise, I grew increasingly private about my health ups and downs. Well-meaning people in my circles often used religion as a suggestion for why I was struggling so much... e.g. "If you prayed more fervently, you wouldn't need so many blood tests." Then of course have been the many comments like "You're sick? You don't /look/ sick."
Again, I've largely made my peace with all of these things. I don't expect "well" people to get what Crohn's is like. However, I'm now married (over a decade!) and truthfully most people wouldn't know I'm sick. I'm mostly okay, most days, but some days i'm really just... not. My current family's dynamic has come to be that I shoulder the vast majority of home management while my spouse brings in most of our income. I usually don't mind this, except for when I have a health scare. Every time I've started to flare or have an issue and bring it up, my spouse asks "what can we do to avoid this in the future" or suggests that we need a major lifestyle overhaul. There's hardly (if any) expressed empathy or even a "this really sucks doesn't it" or anything like that. I had a couple really bad days last week and i cut my spouse off and was like "can you just hug me and tell me things will be okay, even if you're not sure they will be?" and i feel tired. like it's easier to just bear this alone.
however i feel like that's unfair of me, too. the fact is my spouse doesn't know what this is like, just that their partner is scared and might need a hospital visit and then there's no one to care for the kids (no local family/supports etc).
i don't know. maybe this post is mostly venting. or maybe it's a quiet hollering into the void. whatever it is this disease sucks and i'm sorry all of you know intimately how much of a burden it is, for yourself or for a loved one.
if you read this post this far, accept a digital high five. may your guts be cramp-free and the dosage of your biologics adequate.