CHALLENGE: Perfect Comeback. Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did–what did you say or what would you have said to take back control and let them know they were out of line? #HAWMC
NOTE: My amazingly wonderful and loving husband ok’d me to write this post. Thankfully, he now understands the seriousness of IBD… but that wasn’t always the case.
When I first started exhibiting symptoms of Ulcerative Colitis, I didn’t tell anyone. I suspect that I had two “mini” flares before I was diagnosed during the third one. The two before weren’t nearly as bad.
I started flaring in January of 2011. First came diarrhea, then bleeding crept in. By January 15th, I was producing pools of blood in the bottom of the toilet twenty times a day. I was still working and attempting to function like a normal human being. I mentioned to my then boyfriend (Dave) that I was having digestive issues. I had been asked a few months prior to be the proxy in the rehearsal of a wedding for the fiancée of one of Dave’s best friends.
Feeling like garbage, I told Dave that I wasn’t sure I’d be able to go.
“Oh no… you’re going! You made a commitment.”
I reluctantly drove three hours and made multiple rest stops along the way. I was exhausted, dehydrated, passing bloody BM’s and nauseated. I got through the rehearsal ok, but when we got to the restaurant, I knew I wasn’t going to make it. The restrooms were packed and I had to poop and possibly vomit. Still embarrassed about my symptoms, I told Dave that I wasn’t feeling well.
Annoyed, he drove me forty minutes to where I was staying to go to sleep. At this point, I was starting to realize things were not ok. The next day, I forced a smile and ate as little as possible while running back and forth to the bathroom. At the wedding, was the first time I saw a blood clot in the toilet. I still didn’t tell anyone. I was on edge and really upset, but I pretended everything was fine.
The cruel irony in all of this is that one of Dave’s other friends, who was at the wedding rehearsal and whose home I was staying in, has Crohn’s Disease. I even talked to his mother after Dave went back to the rehearsal dinner. If I had only spoken up she might’ve encouraged me and been able to console me… but I was silent. Afraid of what others would think.
The following week, I went to the doctor. She chalked it up to IBS and gave me pills for a bacterial infection just in case… pretty sure that caused the C. Diff that was diagnosed a few months later.
I was getting worse and worse and Dave was getting impatient with me. After all, I didn’t look sick and for all he knew I just had a bad case of IBS. On February 4th, I got a fever. I knew then and there something was seriously wrong. The next day I missed a brown/black belt class that I’d been really looking forward to and by the time Sunday rolled around, I was lying in bed experiencing the worst pain of my life. I was so frightened. I couldn’t ignore the pools of blood in the toilet anymore. There was something horribly, horribly wrong.
First I called my Mom. She’d know what to do. I left her a message because she didn’t answer. Then, I gulped and called Dave. Whenever I’ve felt ill while dating other boyfriends, they’d always get annoyed with me and tell me that they couldn’t deal with it… and we’re talking things not-so-serious like nasal allergies or hypoglycemia.
Dave answered the phone.
“Baby, I think something bad is wrong with me. I’m in a lot of pain.”
Annoyed and tired of hearing me complain of a stomach bug, he said, “Then go to the doctor! Get it checked out… and there had better be something wrong with you!”
I started crying. His icy words cut through me like a knife. “Have you ever seen blood in the toilet?” I asked him, hoping the answer was yes.
“No.” He said.
“Well, I am. Bloody diarrhea.”
“Just go to the doctor.”
I cried. I just knew that this would be the end of our relationship. What guy would want a girl this sick…? Especially one who didn’t believe me. I didn’t look sick. I was still going to work. I was no longer going to karate… and I don’t think my sensei believed that I was sick either.
That week began the worst week of my life. On February 7th, I went back to the doctor. They did a stool sample. The nurses in there were very rude about it (a story for another time). The doctor scheduled me an emergency colonoscopy since my stool sample was basically nothing but a blood sample.
My Mom went with me for the colonoscopy. They knew it was either Crohn’s Disease or Ulcerative Colitis. Dave still didn’t think much of it until I went back to the general physician and was told that I needed a blood transfusion. I felt numb. I called Dave during my meltdown and told him. He drove in late that evening after work.
He took one look at me and told me that it was then that he knew there was something wrong. I was pale, weak and skinny.
Looking back on that point in my life is overwhelming. I can’t tell you how many meltdowns I had. Writing this post has been a difficult one for me. I’ve been reading over my Facebook status updates and notes from that time. I’m crying as I write this.
It’s hard to deal with people who don’t understand. Dave just worried that I was a hypochondriac… until he saw how bad I looked just before the blood transfusion. The hard truth is, most will never truly understand that even invisible diseases are serious. My boss at work knew that I was missing a lot of days at work (sick days I’d been able to build up, by the way). He was getting impatient with me.
There are a lot of things I would love to say to the naysayers out there… but if they’re hell-bent on denying the truth, nothing will ever convince them. It isn’t always easy to stay calm and collected as others blow it off, but you have to be kind. It isn’t their fault they don’t understand. Even I was in denial for the longest time. I think we all are in denial before the harsh reality sets in.
When others question if we are sick, we, too, begin to wonder if we’re really as sick as we feel. This is dangerous. This could lead to improper treatment which will make things worse. Yes. You are sick.
No, people will not understand. But don’t worry about them. This is your battle to fight. The best you can do is remain calm, be respectful and keep fighting. Find support. Talk to people who’ve been there. Most of them will be kind, caring and understanding. Because they’ve been there, too.
