Part of living a life with Crohn’s disease is being so often misunderstood. And more importantly figuring out a way to be okay with that.
There will be judgement from others along the way. Obviously we can’t control what people think about us and how we live our lives. Not everyone you come in contact with will want to understand your situation, or care. It’s just a truth that I have come to realize after many recent encounters in my own life. There is a time for everything. A time for educating people and a time to not waste your words on deaf ears. Or waste your spoons for that matter. For me, it can be hard when I can actually physically feel that judgement coming from others. It bothers me when I know people have the wrong idea about me and are judging me based on one piece of my puzzle. It can even get me to second guess my own decisions and life choices I’ve made, leading me to feel like I’ve done the wrong thing or like I’m a bad person because I don’t live up to this world’s expectations.
People will make assumptions, it’s just how they are wired. But, just because people do judge, does not mean that they have the right to judge. Always remember that! I have to remind myself of that constantly.
But… How are we supposed to not let it bother us, when we know there is going to be judgement? There is literally no avoiding it.
The problem is when people are judging a chronically ill person’s life based off of what a healthy life is supposed to look like. When you do that, it won’t make sense and you are absolutely going to get the wrong idea. For instance, people will assume things like… “oh she stays at home all day and does nothing, she is just lazy.” “she doesn’t look like she is in pain, so she has to be lying.” “she doesn’t do chores around the house, does she do anything to help support her family?” “No one is ALWAYS sick, I don’t believe her.” “I go to work when I am sick, why can’t she?” When in reality we aren’t just sitting at home doing nothing, and having a ball. Ha ha ha. It’s more like a job in and of itself just managing a chronic illness and all the responsibilities that come with it. You and I both know that it is NOT the lazy vacation that they are all picturing in their heads. So you see, we have to find some way to be okay with people thinking whatever they are going to think, because we simply can’t control it.
If you are like me, you want to set the record straight and make sure people have the truth/right idea. I mean who wants people thinking they are a lazy bum and a waste of human flesh?!? No one! And who wants to be made to feel that way?? No one! But at the same time it can be very exhausting trying to explain your situation to someone! It’s complicated and hard to put it into words especially, short form. And not everyone deserves an explanation. And, I don’t know that it is truly possible for anyone to really know what we fully go through. Only we know our journey’s inside and out because it is happening to our body. We are the only one’s that live through it all, and feel what we feel.
I used to be a healthy person; So I know the perspective from which most people are coming. They just want you to be healthy and positive. Also, if you are working, providing for your family and have an active social life, then all is good. That is how your life is expected to be…that is our cultural norm. You work, sleep, eat, and socialize. But when you have an illness that makes it incredibly hard to do any and/or all of those things…Simply put, you don’t “fit the mold”. You don’t meet the expectations. That fact alone immediately lumps you into a category that is very hard to comprehend. People’s minds will immediately go to a place of: ‘why aren’t you doing things like the rest of the world…what is wrong with you?’
Ladies and gents, I am here to tell you that we have become accustomed to a foreign way of living.
“What do you do all day?”
“Why can’t you get a job?”
“Don’t you get bored staying at home?”
“Do you take care of all the household chores?”
“What is it that you DO do?”
“You should get out more.”
“Have you tried exercising and eating healthier?”
“Do you have any big plans for the weekend?”
“What do you mean you aren’t feeling well? I just saw you and you were fine.”
“But you look healthy!”
Yes, the chronic life is a completely foreign way of living to the average person. Most people get sick and then they get better. We stay sick and people don’t easily grasp that concept. They don’t want you to be sick, because that is a negative and they generally get tired of hearing about it. Also, People expect to see sickness on a person. So when they don’t see that you are sick, they can’t fathom it. They may think you are lying or assume you are just lazy. Granted…in a lot of cases you can look at someone and know they are sick; like a cold tends to have very obvious physical symptoms. That is not the case with Crohn’s disease at all. The symptoms are on the inside for the most part. You can’t see what is going on inside the GI system and the effects that it has on the whole entire body; because mostly it’s all on the inside. And let’s get real, outsiders won’t necessarily see the worst of our disease, because personally we aren’t going to let them see it. Yes, there is a lot that goes on in the bathroom, but that isn’t what I’m talking about! I doubt any of us want to be around people when we feel and physically look horrible. So it stands to reason that people aren’t going to see it, unless we let them see it. We are either gonna stay at home or cover it up with clothes and makeup.
People will likely be confused when you are walking around “like normal” when you say that you are in a lot of pain. With all things that involve chronic pain… you get used to it. That means finding a way to go on living your life with that pain. I’ve found that my pain tolerance has improved over the years. I can be sitting and chatting with someone at a level 6 or 7 of pain. It’s just become such a norm for me, but the average person can’t understand how that is possible. To them, that level of pain might be what sends them into the ER. It’s an alien concept to a healthy person to just live with the pain, because that is counter intuitive. Yes, normally, you figure out what is causing it so it can go away. But when there is no cure…you gotta deal.
Another point I’d like to bring up– how Crohn’s disease looks and acts differently on each individual. Each journey with this disease is so unique. So there shouldn’t be an expectation for what Crohn’s “looks like”, at all. My inflammation may be in different parts of the body than yours, producing different symptoms and complications. Some patients have years of remission while others like myself may only experience small periods of symptom-free time. Some may be constantly hospitalized and need multiple surgeries, others may get away with a simple OTC medication. It is literally all over the board with this disease.
That being said, the general public will compare and expect our journey to look like their friend’s journey with Crohn’s disease. It’s gonna happen. When you don’t know how to understand something, you do your best by comparing it to something you already know, right? It’s just how it is. So again, educating people can be helpful at certain times like this.
After experiencing a lot of these judge-y situations recently, I have to tell you that I don’t have an answer for you on how to be okay with it. Perhaps it just requires time or a level of “not caring” that I’m just not at yet. Maybe I just still feel a lot of guilt over things that aren’t in my control. Perhaps the old Jana, “healthy Jana”, is being too hard on chronic Jana. Both Jana’s have been know to do this, ha ha ha! Either way, I have been struggling with this a lot lately and if you have struggled with this too, then at least you know you aren’t alone in your feelings. It is very much a part of this journey with inflammatory bowel disease and I’m sure many other chronic illnesses too.
While I can’t offer you an answer for how to be okay with the knowledge that people will judge us, I can offer you something else; a judgement-free zone. I started this blog to help provide ongoing support for fellow Crohn’s disease patients and others with chronic illnesses. Always feel free to share your own experiences here without fear of judgement. While you may feel that the outside world just doesn’t understand, that is not the case here. We are all just trying to make it through this journey in the best way we know how.
With that said I will leave you with these thoughts…
Be comfortable in your own skin. Don’t be ashamed of the life choices that you have had to make based on your illness and your health. No one can fault you for that. Know that you didn’t make those choices lightly and that there was good reason behind each choice you made at it’s time. Don’t let someone else’s expectations and opinions cloud your own sense of judgement about your life. You are the only one that has to live your life, so you have to do it the best way you know how.
If you have struggled with similar situations and have figured out how to deal with them, I would love to hear your comments below. Do you have a phrase that you use when people ask you certain questions about your life? Let me know!