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| How I see the world...always with a blur |
The stigma of this issue is what I want to talk about today. How do we those with chronic illnesses deal with people that don't know us but assume that our illnesses are from something else?
I cannot count how many times have looked at me as I leave establishments that sell alcohol with disgust. I do not drink yet if you were not sitting at my table you would not know that. when I stand I have a tendency due to balance issues to almost stumble as I am walking. People give you the look and you want to go over and tell them hey I am not drunk.
Would they listen? Why should I have to explain things to strangers? Yet, the stares make me uncomfortable and the hair on the back of my neck stands. I do not know how many times I have announced as leaving places that I am not drunk but have balance issues.
I remember being at a fast food restaurant I was getting a drink while everyone else with me was eating. I was trying the going without a cane trick. I hate having to depend on something to keep me vertical. At the time there were moments that I could get by without it. So as I started to my seat I realized that I should have brought it in. The look of the police officer as I had to grab the counter and table tops to get to the table was priceless. Yet, another moment when I felt that I had to explain I am not drunk I just have a balance issue.
Then things get more fun because there are times that my Gastroparesis flares up when I am out and about. Nothing like having to get to the bathroom fast while stumbling. I know I try to wait until I get home but there are times that you can't help it. Where you are is where it is going to happen. So people see the stumbling the rush to the bathroom and then if they are really nosy they hear things that wished they didn't.
It is those moments that I have the worse time explaining what is going on. People judge you without knowing you and it makes life very difficult. People assume that you are sick because of something that you did. Our society bases their knowledge of illnesses on what they hear about. How many have even heard of Gastroparesis or Meniere's disease. The fact that a person has both is even more rare and causes a lot of questions.
I have even had close friends misunderstand my illness and see me going to the bathroom after eating and thinking it is because I just ate too much. I have seen people that have known me for years and assume I have fallen off of the wagon when they see me walk. They have no clue the embarrassment that goes with this. Stares and whispers effect a person tremendously and have a way of bringing down a person's self esteem.
A lot of people with illnesses start abandoning going out because they cannot deal with the symptoms that goes with characteristics of their disease. If you can't walk a straight line because the Meniere's or another illness has stripped it from you do not be ashamed. If you have Gastroparesis or another motility issue that forces you to the bathroom do not hide in your home.
You have the rights to go out and about and enjoy life. The only way to truly enjoy life is to do the things you like best. Do not let an illness keep you down. If individuals don't understand don't waste your time explaining it to them. Live your life to the fullest.
I try my best to remember that I can't control what is happening with my illness. It determines how it is going to effect me. What I can control is how I respond to individuals that don't understand. I have started turning my symptoms into an awareness campaign. It is a way of turning this on those that don't understand. It also gives me the control that I really needed to overcome the feelings I was having with the illness.
So when someone sees me stumbling and they begin staring I start my conversation. Here is a good first liner and it helps break the ice. Wish I would have at least enjoyed getting drunk. Then I have the opportunity to explain to them how I have a vestibular illness called Meniere's that effects a large portion of my life. I go into a quick definition and explain that I have tried several things including surgery. I tell about how I am losing my hearing and how there are times that all I can do is lay in bed. The looks start disappearing and occasionally you hear someone say I am sorry. I will write tomorrow how to deal with the I am sorry people. But it works the stares stop and they leave me alone and I can continue what I am doing.
I also have a great way of handling the Gastroparesis in public. If it happens I often take someone to the bathroom especially if there is more than one stall. As people come in with those crazy statements or stares. My cohort makes this statement are you okay. I can't wait until they find a cure and you don't get sick any longer. Then immediately people stop thinking that you are drunk or purging. It also helps if your cohort mentions Gastroparesis and if the other person ask the question what it is there is the moment to bring up the illness and the symptoms it causes.
Believe it or not the best awareness campaigns happen when you are just being you. People find out that they should not judge a book by the cover. The stereotypes get destroyed and you can be yourself. The fact is most people are dealing with something themselves and when they see how you are being positive and keep on going it gives them hope.
So off to bed I go. Today was a crazy day. Spent most of it laying down trying to keep the spins from happening. Then when you get up at eleven at night it is kind of hard going right back to sleep. Especially when your tummy decides it is time to wake up and cause you to be nauseous.
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won. Until then don't give up hope. It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.
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