Fear is the Enemy of Logic

Being sick is scary.

I am sure it is awful for everyone - no one likes feeling atrocious and helpless - but when you have an immune problem being sick is like a thousand times more intense.

As an extremely healthy person for 18 years of my life being sick was a rare and annoying occurrence. Now I have AIH and take medicine that will make a minor cold seem like world war III in my body. It makes being really sick - scary.

In the autoimmune community we hear sad, horrific stories about people, like us, that lost their battle - not with their specific disease but because of some virus or bug that their now heavily medicated and muted immune system couldn't handle. It is sad and terrifying. I take all this medicine to keep my liver functioning and all that medication could very well kill me...talk about a catch 22.

Recently I had a lovely bought of salmonella. Probably one of the worst experiences of my life. While being that ill was awful what was more terrible was the fact that while I was sick no one knew it was salmonella and I had pretty much convinced myself my body was in self destruct mode. No one likes being sick and no one likes being scared. I was very much both of these things - which is very hard for me to admit but for the sake of being honest I have to say it.

Even worse than being horrified myself is watching my husband- and my mom, who flew half way across the country because I called her convinced I was going to keel over at any moment, sit worried and just scared. It is in my DNA to want to make everyone feel better (my best friend calls this my super hero complex) and so watching them be scared and worried and tired and being so scared and worried and tired myself that I didn't much reassuring to say just made the entire situation grow exponentially worse with each passing minute. It was on the third night without food or water and still being violently ill with all my blown veins and shots to the stomach that I looked at my dear sweet exhausted husband and he said "Its okay to be afraid." and he kissed my hand.

Ladies and gentlemen you may be thinking "duh that stuff is really scary why wouldn't you be afraid" but it took that moment for me to realize that not just when we are sick and dealing with the usual battles of autoimmune problems but really all the time:  it is okay to be afraid. That is how you know you have people you care about and things to accomplish in this world. The problem is not letting that fear dictate life.

 I had started to let the fear of being sick, of doing too much, of having to explain my illness and deal with the judgement, the fear that this stupid autoimmune deficiency is going to kill me - mute my existence. It just is not logical (fear rarely is logical). I have found that admitting to the fear - which is really the hardest part for me - is the first step in overcoming it. I was not put on this planet to live a quiet meek existence and I am doing a disservice to myself and the people I want to help by letting fear of my illness, medications, hospitals, and all that jazz dictate how I interact in this world. So I have made a promise to myself - and to all of you - that when things are scary I will admit to the fear and embrace it and I will make something good come of it.

This life is terrifying but wonderful and it is always worth the fight.

Ignorance is NOT Bliss

It is annoying. 

Whether you have AIH or someone you love does we have all been through the awkwardness of people being ridiculous about our immune disorder. 

Let me be completely clear so there is no confusion: Autoimmune hepatitis is NOT contagious.

It is an autoimmune disorder and thus by definition a problem with my immune system.

So, I do not have a drinking problem - nor have I ever, I don't do drugs/ use dirty needles, I don't hang out with the wrong crowd - my body just has some self hate issues OKAY?! So stop with your assumptions and asinine comments. If you don't know then ask in a respectful way because I am more than happy to discuss it but don't look at me with the sketchy expression or roll your eyes and back up a few steps so you don't "catch" my disease.

Also, medical professionals the same goes for you. You have an education in medical issues and yet you still don't seem to understand AUTOIMMUNE. Putting on 5 gloves and a hazmat suit makes you look like an idiot and makes people think I am carrying some sort of crazy contagion - so stop before you hurt yourself or I hurt you out of frustration.

For those of you that don't know the simplest way I have found to explain AIH is as follows: 

You know if you were to get a liver transplant but you body rejected it? Well that is essentially what is happening. My body has a hyper active immune system that has started attacking the good cells of the liver because it thinks they are bad. This causes scarring and damage and is very bad so I take drugs that suppress my immune system and keep inflammation down so that my liver can keep me alive! And it is an autoimmune disorder sot his means that it is in no way contagious.

To all my fellow AIHers don't worry we all have wanted to punch at least one person in the face because they make assumptions and say stupid crap. I have found I have to choose my battles. In effort to raise awareness I try to explain it. But, where I can fix ignorance I can't fix stupid, so sometimes just smiling, shaking my head, and walking away is all I can do. I have even though to myself that if someone is that ridiculous and moronic that I am glad they think I am contagious because then I don't have to work so hard to avoid them.

Having AIH is cumbersome and annoying and exhausting and to have to try and explain yourself to every new person or group can just make the entire ordeal overwhelmingly frustrating. Just remember you aren't alone in the fight or the frustration and hopefully the more people we are patient with and don't judo chop int eh face the more people will know about AIH and we can start spending less time explaining ourselves.

Stay strong and remember to smile because it is always worth the fight!