But you Don't look sick!!!!!

Chronic Illness can play a tricky part in life. One day you are feeling like you can conquer getting out of bed and moving to the couch and the next you can’t even move to go to the bathroom.  The stereotype behind them is also very hurtful and frustrating to say the least .

The saying I hear a lot is.

“What  you have Lupus, But you look great and not sick at all. “ Your makeup is on and your hair is done You look Normal!

This drives me crazy,

 I was talking with a friend who suffers as well  we were discussing this disease and how it would affect the world if you could see the insides of our bodies on the outside. 

Would anyone look at us? 

Or would they be able to look away once they did?

 If the pain we felt was colored so that you could see it. 

How would we look to the outside world?

Would they say that we looked Normal Then? 

How the world treats Invisible Illnesses has got to stop. It’s hard enough to deal with these diseases but to feel like you have to explain, justify or  prove you are sick when you look good on the outside  is ridiculous . 

The reason for this is not a whole lot of people know what Invisible Illnesses are.

Take this instance

I was out to eat with my husband on a busy Friday night to my Favorite place. Olive Garden It took me hours to get dressed and put on some makeup to look like I wasn't hit by a Mack Truck. Because that is how I felt.

Yes I knew that it would be crowded and that more than likely it was a wait.

I was prepared for this we put our name on the list and went back outside to sit on a bench until we were called. This due to the inside being so crowded

As I sat in the cold  my fingers and body started to freeze up. I had a coat on and  even with my hands in my pocket I was still freezing. This would be my Raynaud’s Syndrome acting up .So Inside we went and stood up waiting for an open spot to come up so I could sit . When it did I took it.

I then had a younger lady  say that I should have let the older couple who were standing have the seat and that people now days don’t have the respect for the elderly.

I wanted to say to her some very explicit words and ask her Why she didn’t let the older couple sit down in her spot?  But instead I just smiled. 

 our names were called and  Lonnie went ahead to let them know we were there .  The older gentlemen walked over to see if I needed any help standing up?  He then asked me what it was that I suffered from. 

Curious I asked him how he knew?

 He smiled at me and said. I could see the pain behind your eyes,and the struggle you had standing against the wall. I also saw that you had a brace on your knee under your pants. When you get older you can see these things a lot more. He chuckled …You can see the people who are fighting so hard just to make it through one more  day Those people you know that it  took a lot of time and energy  for them to get up and be out . 

I then smiled and told him that I have SLE/Discoid Lupus. The older couple proceeded to say how sorry they were and encourage me  that I needed to continue to fight and stay brave. I told him that I am and will continue to fight every day and that he and his wife were amazing people.  As I was walking or better Yet hobbling away they sat down in our spots. I overheard his comment to her “You should be ashamed of yourself for judging someone that you know nothing about. “Be thankful that you have the body you do because she is fighting her own body every day.”

The disease she has is harder than Getting old. I am able to do more things in a day then what she can do in a week. That girl is one of the bravest people you will ever know! He was still talking to her as I made the way to be seated. This made me smile...

As the older couple was walking by our booth they both just smiled at me.

A few minutes later the younger couple walked by and the young girl mouthed the words “Sorry”

I don’t know what was said after I was out of ear shot but I was thankful for that couple who stood up for me in that instance. Who spread a little more awareness that day? Complete strangers to me. We need more people like that in the world.

This seems to be the pattern when I go out. There is always going to be that one person out there who will make you feel like you have to prove to them you are sick. And Let me tell you what , you don’t have too, you should never have to prove it to anyone.  Dealing with the disease is hard enough.  

I think that more Awareness is what is needed!

 I am doing my part to spread it anyway I can.

Another thing has happened here in Utah that makes me frustrated

 A  Bill that could have made so many sufferers of chronic illness easier Failed!

 This would be the Medical marijuana Debate. As I have been hit with a chronic disease I understand what this would have done for me and others if it had passed.

For so many people who suffer this could have made a Huge Impact On the pain we feel every day.

It could have meant that I got some of my Life back and a sense of being able to function without the amount of medication I take now.

As of now I am on so many medications that I can't survive without them.

The pain lately has been so intense that I basically have given up on the idea that I could get better .My medication for pain is easily something that anyone could overdose on or become addicted. I have zero tolerance for pain and with my right leg in more pain then I can control the pain medication is just not working.

I am seriously wondering how someone can say that this stuff couldn’t help and that it would be used for recreational use? Hello people, it’s already being used! I have looked into this drug and if it can help I want to try it. The whole controversy is frustrating and confusing All I know is as of now I am a 40 yr. old disabled mother of 5 kids whose lives are flying by me right before my eyes  I am missing out on the things that should mean a lot to me and them . I am also a wife of a wonderful man now for 22 yrs. and I can't even be intimate with my husband because of this disease.  I have no life, I am bedridden because I can't move nor does anything long enough to stand. This UTAH!  Is not living! The pain meds are not working! This is real and if this was another chance for me to try to live a semi normal functioning life and it has been taken away I am going to be pissed! 

 Chronic Illnesses are Real we are not making it all up. Trust me I would never wish My Symptoms on anyone else

(Not even my worst enemy.) That is saying a lot.

There has to be a better way to do things without all the medications.

There has to be a better way to manage a semi- normal life

There has to be a way to just feel better.

That my friend is where I leave I am exhausted and sitting in this chair is enough.

Again as always thanks for reading.

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                                   Stay Strong and Keep Fighting

                                  MISTY