Sunday, August 21, 2011

What NOT To Say To The Chronically Ill Person 101

This is chronic illness education week. We will call it, What Not To Say To A Chronically Ill Person 101:

What Not To Say To The Chronically Ill Person 101 Day One: "Someone always has it worse off than you do." Well, DAHHHHH...I/We know that. We are sick not stupid. Plus, does that mean what we are going through is nothing? Just because someone has it worse off than I does not make what I am going through any easier. I still live through hell on a daily basis, some days worse than others, it isn't easy. Please respect that. When you are sick I am very understanding. You get a cold and think you are dying. Imagine feeling sicker than that everyday. Impossible to even imagine I am sure.

What Not To Say To A Chronically Ill Person 101:  Day Two:  “All you need to do is get out more.” Oh believe me there is nothing more I would rather do but with only x amount of energy in a day that can be impossible. Imagine the most tired/fatigued you have ever been, now times by 10 and have it every day. Doing simple tasks can become impossible. I need to use the energy I do have on the little things most people consider nuisances. Laundry, dinner, cleaning, and taking a simple shower. A job is out of the question. So when I can’t meet you for lunch, please understand. I need my energy to love my family first, after all they are the ones who see, understand, and take care of me when I am very ill and on a daily basis. If I meet you for lunch they lose out and I am not willing to risk that loss. Plus every time I leave the house I am putting myself at risk of infection or a cold. If you get a cold you are sick for a week, if I get a cold I am down on the couch for three weeks and usually end up with an infection of some sort. One more thing, if this were the case I would have traveled around the world by now!

What Not To Say To A Chronically Ill Person 101 Day Three: Phone rings at 8an, 9am, 10am. I fumble for the phone and try to get a grip with stiff hands. Hello in a very shallow voice. “You are still sleeping? It is time for you to get up.” Ok thanks for that! Now my whole day will be even more shot because you think because you only need 6 hours of sleep a night that I do too. Wrong! If I can get 10-12 maybe, just maybe I will have a good day. Thank you for understanding my world as I try to understand yours. Now, I’m gonna try to go back to sleep but I am almost sure that isn’t going to happen now so my whole day is going to suck.

What Not To Say To A Chronically Ill Person 101 Day Four: “What do you mean you have to cancel our plans, or,  "you don’t have to leave already you just got here.” Ahhh ya I do have to cancel. I am sick, what part of sick don’t you understand? Or maybe I can only come to a party for only 2 hours please be happy I even showed up because it will take me 2 or 3 days to recover from sharing that amount of time with you. Once again not to mention the risk I am putting my health in by being around all the germs of the world. Please understand!

What Not To Say To A Chronically Ill Person 101 Day Five: "So and so is always at the doctor I think she is just a hypochondriac or she is always sick I know she just does it for attention." I hear this so often when other people are talking about people they know. When I hear people say this about other people I always wonder what they say about me when I am not around. Man, it must be a great conversation! Wish I could listen in sometime. Be careful what you say! Gossip hurts more than just the person you are gossiping about.

What Not To Say To A Chronically Ill Person101 Day Six: "You just need to take vitamins. Like B12, more calcium. I have a friend who tried , insert any vitamin here, and they felt so much better." Oh really does your friend have antibodies in their blood attacking their insides? Eating away at cartilage? Causing their muscles to becomes so weak they can't move at times? Causing their eyes to get so weak she can't read or see straight? I could go on but I won't. Does your friend see multiple doctors/specialists on a such a regular basis that now when she goes for an appointment she talkss about her family and theirs to each other? Does your friend take a handful of meds every morning just to get moving and have to give herself a shot of chemo drugs every Wednesday that make her sick for 24 hours but help relieve her symptoms the rest of the week?  Probably not. So shut up! Plus if that were all it would take to make me feel better I would have consumed every vitamin known to man to take me out of this hell!

What Not To Say To A Chronically Ill Person 101 Day Seven is my quote, “I don’t believe it is that people don’t want to understand chronic illness. I believe that they have just never been around it so they do not understand it. That is why I am here. To educate. I do not in any way get mad at these comments or statements I just get a little sad and irritated at times. Sad that people cannot love and understand others without often times having to give their opinions or smart comments. It turns you into a very inward place of misunderstanding. Chronic illness is very lonely but it also makes you realize who and what matters in life. Who loves you, who is there for the long haul, and what a strong person you are even on the days you don’t think you are.”

I could actually go on forever but I am going to stop. Unless someone comes up to me and says something stupid then I will be back here writing it down. For some reason I think I be seeing you real soon :)

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