Thursday, February 7, 2013

You Don't Look Sick

Okay let me start off by saying, these are four of the most irritating words in the world when they are said together. You can not imagine the comebacks' I want to give when I hear this ridiculous, insensitive, not well thought out comment. I know everyone is not being rude or patronizing when they say it. I understand that people sometimes just do not know what too say. Take it from me, if you do not know what to say, it is okay to SAY NOTHING!!!! The worst thing you can say to someone that is suffering from any illness is "You don't look sick." What the hell does sick look like?

In the days of leprosy, sick was obvious from across the street. Chicken pox can be seen without straining the eye or using a microscope. But guess what? Sick can be inside a corporate executive officer in a thousand dollar suit that never misses a day of work. Sick can be inside a mother of two, that cooks, cleans, doctors, teaches, and cares for her household 24 hours a day. Just because I look like I am okay, does not in anyway mean that I am okay. If I spend 3 hours (which I do sometimes) waking up, getting dressed, taking my medicines and tying my shoes to make it to a 20 minute doctor's appointment chances are I look better than I feel.

The thing that I think people don't understand is having an illness that effects your mobility, your vision, your memory does not scream to loudly on the outside. On the inside it is deafening! Imagine being trapped in a room with all the things that you fear or things you do not like or people that annoy the heck out of you. On the outside of that room is a world full of people that only see you when they look in that room. You are in agony, pain, scared, and struggling to make it through the day. Someone walks up to the door and says "Well don't you look wonderful?" You don't want to explain all that is going on in the room. You don't even have time to go into it. You wish they could see your suffering and how that room is affecting your life. They don't see it.

I have days when I can not remember people's names. I have days when I can not stand without falling. Then there are days that I was barely able to dress myself. You have no idea what kind of day I am having do you? Of course not. So it isn't fair to tell me I look good when you aren't sure what I feel like inside. I know we think that is what people want to hear. The reality is that is not what we want to hear. The reason is because we feel so bad inside and the outside is so deceiving. Even the medical field is guilty of telling us, we don't look sick. Thank God for medical testing!!!

We need to understand that illness can be invisible. That doesn't mean the illness is gone or the illness is fake. It means that most of the suffering and the pain are going on inside. Now people will ask, "How am I suppose to know that?" I am not sure that we expect you to know that. We just want you to assume it. Trust me if a person with chronic illness is having a good day, you will know it! I am always stunned by people's reactions to me. When I see people at the mall or even at church and I am using my cane, I usually get, "Well look at you, today is a good day." How do you know that? I mean everyday is a good day in the sense of I am alive. However, when you have MS, RA, ALS, Cancer, Crohn's, Scleroderma, good days can be scattered. I know for me any day that I have my cane is probably a day I am struggling or feeling weak. I do not want anyone running up to me saying, "You really look pretty well." AHHHHHHHHHHH!!!!!

Take my advice, if you know someone is dealing with these invisible illnesses approach them with compassion and empathy. Now I didn't say pity. Please do not do that. That is just as bad as telling them they look great. I just think if we assume our friends that deal with illness are having a bad day then we can be happy and excited if they tell us they are having a good today. Everyday is different, There is no same old, same old with these diseases.So approach them with this question, "How are you feeling today?" And stand there while they answer you. You may hear that they feel absolutely fantastic today. You may hear that they have had better days. Whatever you hear will be their truth.

I will even offer this advice. We live in a world where information is at your fingertips. If you have a sick friend or family member and you truly care about them, do some research. It doesn't take much to Google MS or RA. You will not only be learning, but you will be showing your loved one that how they feel is important to you. I have a friend that knows more about some of my illnesses than I do. When she see's me with my sunglasses on inside a building she says, "Oh are your eyes bothering you? Is your optic neuritis back?" When my hands shake, she says, "have you been overdoing it?" It means more than you know when the people you love truly know what you are dealing with.

So let's take the sentence "You don't look sick," off the table. It is not acceptable anymore. We have come to the realization that we really do care how they feel. The best way to find out how they feel is not by telling them that they look well. It is by assuming they may not feel well and asking them how they feel. Isn't that simple? I say you give it a try. Let me know what happens. :)

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