Monday, November 12, 2012

#NHBPM 12 of 30 - Call BS on something

I'd love to go over all the things that are BS in the IBD community from the whole "you don't look sick" comments, the "it's all in your head" doctors, the people who think "if you changed your diet you'd feel better" and of course the stupid as stupid can be commercials for treatment medications that let you know that "Crohn's disease can cause inflammation". No shit.

Instead, I'm calling BS on myself. Yep, you read that right. Well, I'm not doing it on my own - I had help from LOTS of friends. One in particular wrote this:

This picture was taken when I returned to Hawaii after being taken to the mainland by my mom - Courtney shares the story.

"I met Melissa in 2008 when I moved to Hawaii. I had just graduated college in Texas, got married to my husband who was in the Navy, got a job teaching at a private school in Hawaii, and moved to begin my life as a Navy wife. As a new hire at the school we worked at I had no clue who my teaching assistant was, I just knew I had one and her name was Melissa. During our week of training we decided to go to breakfast one morning to get to know each other and talk. I talk all the time and she talked about 10 million times more than I did, and so fast. This was going to be interesting!

We worked together for a few months with me having no idea she was sick. Sometimes she would leave the classroom in a hurry as she told me she might, sometimes she didn’t come to work if she wasn’t feeling great- but I never thought much of it. Sometimes she came to work to be with 24 needy 4 year olds after taking her medicine just so that she didn’t have to take the day off. Melissa was great at covering up - or in her mind - dealing with her disease. It wasn’t until her husband left for a deployment and things took a turn for worse (at the time) did I see how bad it was.

One day she called to tell me she wasn’t coming in and so we got a sub. After school I called to check on her and I could tell she was crying. I told her to get her military ID and whatever else she needed because I was coming to pick her up and we were going to the hospital. I called a mutual friend and told her to pick up her boys.

By the time I played 20 questions in the car we were there and in the ER. They called her back and for the first time I saw the port in her chest - it was always covered by her clothes. I don’t think I knew how bad it really was until we got back and the doctor asked her if they should call her husband home from oversease, she was going to need to be under constant watch. The doctor was talking about her medical history and I sat there with my jaw on the floor. How had I worked with her for this long and not known she was having major issues inside her body!?!? She said "No" to the doctor calling her husband home and I wanted to jump on the table and hit her! Seriously! Again, acting like she could handle it all while obviously falling apart. I decided I was calling her mom. Just a couple days later her mom was in Hawaii to help take care of the boys and Melissa.

After Melissa was discharged she and the boys went to live with her mom. Months later her husband came back from deployment, they moved to the arctic tundra of North Chicago and then moved to the great state of Texas! We have kept in touch and our friendship as grown. She is someone who would do a million things for other people just to stay busy so no one knows the pain she is keeping inside her. She’s selfless, someone you want on your side, a fighter, and a friend. As I think back on almost a year ago when I got the grossest (to most people- but not me!) picture on my phone to now when I get text messages about her lack-there-of butthole I am thankful for my friend. I’m thankful that a doctor finally took the time to listen to her and take out the parts that were literally killing her, I’m thankful that this summer I got to visit her and see her new accessories, and I’m thankful that she is still going to be around to watch her boys grow up and be an advocate for all of the people who suffer from this disease that no one can see.

Thank you for opening my eyes to the disease and being my friend. Love you!"

Me with Courtney's daughter Claire when they visited me this summer.

Sooo, after all that - what is my point? My point is - and I had a totally awesome online discussion with a well known IBD blogger about this - that I completely bullshitted myself for the better part of 9 years when it came to my disease. By BSing myself I was also BSing my friends, as evidenced by the above post. And trust me, Courtney isn't the only one who has called me out on it in the past year. There have been LOTS of people who got pissed because I kept them out when they were willing and able to help.

Maybe I was trying to convince myself - subconsciously - that I wasn't sick? If I kept myself busy, continued to volunteer and work and everything else then everyone else would think I wasn't sick either? WHY was I hiding being sick? I honestly have no CONSCIOUS reason. I can imagine now that I was hiding it because I was embarrassed. I mean who wants to tell people that they are pooping blood and can't get out of bed because of the pain and exhaustion that goes along with it? I didn't want to appear weak. I was SUPERWOMAN! I could do ANYTHING! And I could do it with a chronic illness. Annnnnnnnnnnd, then the walls I had built around me to hide my disease started to crumble. I got sick when no one was around to take care of me and I had to let people into the fortress of Crohn's disease to get help. I tend to do, I went completely to the other end of the spectrum. If you've been around for the past 11 months you've probably heard me talk more about Crohn's disease than I did in the preceeding 9 years. I came to terms with it, what it meant and how it WILL affect my life. It IS a part of me. It is NOT me - I am so many other things! BUT, since it IS a part of me and always will be - I'm grabbing it by the balls. I won't BS people anymore - I'll tell you when I am not well - and if you've been around the past 9 years you are probably gonna be surprised at how often I DON'T feel well so get used to it. I don't (at least I try not to) whine, bitch, complain and moan about it. I get frustrated by it. It pisses me off. That is all ok. I won't let "it" make me a bullshitter anymore.

I love myself, my family and my friends too much to do that again. If you catch me doing it - you have permission to slap me around.

Find your silver lining and be awesome.

1 comment:

  1. Hi Melissa,

    I love this essay! I'm glad you found peace with this. I stopped fighting the sick label a long time ago- it's just one more fight and nothing good comes from that. One big lesson this disease taught me is to listen more to what my body says. When I'm not flaring up though, I do feel completely normal, so I might be lucky in that regards. Keep up the good work!