Hi again and welcome to another Crohn's Confidential. Today it is all about questions and comments I've received about my invisible illness. Over the years, I have heard a lot of things from people- some are good, some are terrible, some are hurtful and some I can't imagine how they actually thought up that question.
Questioning my diagnosis
At one time, I had people in my life who actually questioned me and my family if I really had Crohn's Disease. I swear to goodness, they would pull my parent aside and drill them about my illness and they make comments about why am I going to this doctor, why am I not going to the city. It is so exhausting dealing with that and knowing they truly didn't believe what I was dealing with because I wasn't acting sick enough.
As many people with invisible illnesses, we try so hard to live as normally as we can, but its really hard to fake being healthy ALL. THE. TIME. We are trying to live our lives like every other healthy human. Just because we choose to not to talk about how hard it is for us, doesn't make our illness any less hard. People assume that if we aren't acting sick, then we must be cured.
Along with having an invisible illness, the explanation of your specific illness to others is challenging. Its hard to describe something in terms others will understand, when you yourself have a hard time understanding it.
Rude Comments
When you look fine on the outside but on the inside you don't feel great, its deceiving. When I hear, 'oh you look fine,' 'your're too young to be so sick,' and my favorite 'can't you just take a pill and it will go away?' These comments hurt more than you ever will know. Hearing these make me feel even worse than I was currently feeling.
Sometimes when people say things like 'be positive' 'get better soon' and 'you look fine', those hurt so much more then the person intended. They seem like innocent things to say but to someone who has an invisible illness, we are positive but sometimes it gets too much for us. We aren't going to get better any time soon, our illnesses don't have a cure. Hearing 'you look fine' makes me feel even worse that I already am. I know people mean well and they honestly don't know what to say but think about how the other person might take it.
There have been so many times where someone has said something rude or off putting to me and I don't say anything to that person and I wait until I am alone and I cry my eyes out because whatever they said- not meaning to be mean or rude- I took it in a way that made me feel even more terrible. There are times when I am not feeling well and anything, anyone says to me, makes me upset.
Comparing Their Symptoms to Yours
One of the things that annoys me the most is when I said I'm exhausted, and you say me too; I don't mean I didn't get a great night sleep last night, it means that I'm fatigued because my body is literally fighting itself and I have been acting healthy for so long, its exhausting. Please stop comparing how you are feeling to what I am going through. I am not saying that because I want attention, I'm saying it because its how I feel, honestly.
How to Cope and How You Can Help
Its something that over the years, I've come to understand- it is hard for people to understand what you are going through, unless they are going through it as well. They cannot see your illness and if you are acting like a healthy person, they assume that you are healthy. My advice to others is to listen; simply listen to the person who has the chronic illness- don't add in a story about something in your life that doesn't really compare, don't try to make it better and don't talk about a cure that you saw online (we saw it too, tried it and it doesn't work).
My coping strategies for this is to try to not let it get to me that much and cry. I am a very emotional person to begin with and when someone says something mean, it hurts. I've had to develop a tougher skin over the years but sometimes when I let my guard down, these seemingly harmless comments come out of nowhere and really affect me.
Most of the time, we (chronic illness warriors) don't like to tell someone how we are really feeling; we are holding in our thoughts and emotions because we do not want to be a burden to anyone. It's a lot for us, the people with the illness to have to deal with and to tell others seems too much. We just want someone to listen to us and ask us, how we truly are.
We are trying to live as normally as we can with a chronic illness and its hard some days. Please don't ruin a good day for us, by saying something that will upset us. Please be kind.
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A lot of us, chronic illness warriors, have experienced rude comments, weird questions and suggestion to every cure/medicine/exercise/diet etc. in the world. I did a quick google search for "dealing with negative comments with chronic illness" and about 126,000,000 results came up. WHAT?! I'm glad this is a thing and people are talking about it.
Here are some of my favorite articles from my google search:
Unkind Remarks
Harmless but Hurtful Comments
Stop Saying Stay Positive
What NOT to say
Don't Say these things
[[When you don't know what to say, just smile]]
-gabrielle
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