“No one goes from eating three meals a day to starving themselves all day and only allowing food to be consumed at nighttime…overnight. It just can’t happen. No one just wakes up and decides to do that. Something pretty drastic must have had to happen over a period of time for this to occur.”
I have been dealing with a lot for a while. If you follow me on social media, or even read the pretty infrequent blog posts I have written lately, you probably already know that. Without boring you with the specifics, I want to say thank you to someone for leading me down a very positive path. But most importantly, for believing that something was wrong, and fighting to do everything possible to get to the bottom of it so I can have a better quality of life.
For years, there hasn’t been something right with my body. Again, trying not to go into my laundry list of symptoms and complaints, but lets just say… it has been filled with a lot of pain and enormous frustration.
Things went on for so long that I just assumed this was “my normal” and that I would have to live this way for the rest of my life.
I never liked to compare myself to other people with Inflammatory Bowel Disease, ostomies or even chronic daily migraines because as most of us already know, we are all different. All of our stories are so different. The order of events things occurred is so unique to each patient. Environment, social support, just.. everything is so intertwined which makes finding someone whose story is the same as yours pretty difficult.
As I started making friends who had Crohn’s Disease or Ulcerative Colitis, I began to learn more. Again, all while knowing everyone’s journey is different. I also shared some of my friends situations with my parents and initially was asked “Why can so and so do this and that but you can’t?” My response was always a sincere and sad I don’t know.
As time went on and my health still didn’t allow me to work or pretty much leave my house for any sustained period of time, I began to believe what I had been told – that my issues were not physical. I could go to every doctor and they weren’t going to find anything because the things I was dealing with were emotionally tied up in the life I was living.
I am and have always been a realist when it came to my health. I not only understand my physical body (or know when something is wrong I should say) but I have analyzed my psyche to death as well. I understand my thoughts and feelings and can pinpoint exactly where they come from. I know what my life had been and what it is now and I am very realistic in how that all impacts me.
I suffer from Post Traumatic Stress Disorder. The symptoms that plague me the most are anxiety and insomnia. I haven’t felt that dark hole of depression in years (thankfully.) I am incredibly angry about my grandmother passing. I have enormous guilt about being a burden on my loved ones and seem to be prone to feeling guilty. I have issues with my inability to be independent. And of course, I have additional stressors related to …. life.
There. I said it. I do have mental health issues. So? Who wouldn’t after going through all that I have? I am going to be honest in saying that I think I am more together than most. We all have things we struggle with emotionally and I just bluntly said what I know to be true for me.
HOWEVER, my emotional issues aside, the things I have been experiencing could not be caused by it. Rationally, I knew that but, I began to think they were. I started trying to connect things like “well if I am in pain and not sleeping well or at all some nights then of course I can’t be a productive member of society. And I suppose my inability to effectively manage my anxiety could be exacerbating my pain, making it my fault that I don’t sleep well. Not sleeping well for years can lead to all sorts of issues. Maybe so and so is right. Maybe I do just need to get into deep therapy and then I will be able to feel well enough to work and feel good about myself.”
As upsetting and mind-boggling as it was for me to believe I had been feeling so bad for so long due to my mental health issues, I really started to try to convince myself of it. I tried to look at it as a positive – there wasn’t anything physically wrong so no hospitals, tests, procedures or anything like that. The only doctor I would need to see is someone I talk to, so no need to worry about the triggers there.
Until my boyfriend, Frank, came into the picture.
Within just a few months of dating me, he said he knew something wasn’t right. I told him what I had been told about a lot of my symptoms being the result of emotional distress and he looked at me and said “I don’t buy it. Between my experiences with Dom, and all the communication I have and see among IBDers, what you are dealing with is not normal; even for someone with as complex a medical history as you have and it is not in your head.”
Long story short, Frank never gave up on me. Even when he was personally told what I was dealing with was the psychiatric ramifications of all I had been through with ulcerative colitis.
He never believed it. He never judged me. He never for a second doubted me and stopped trying to help find me answers.
“You are not a mental case because of ulcerative colitis. You just aren’t. That’s not what is going on here. Trust me.”
I don’t want to get into details now since I just had a very telling test yesterday afternoon (it is 4:30am now) and I am still trying to internalize the findings and where I go from here. I will fill you guys in as soon as I can.
For now, I just want to give this incredible man a shout out and also use him as a lesson for others. I get so many messages from fellow Crohns or Ulcerative Colitis sufferers saying they feel crazy because no one can find anything wrong yet they are so sick. I get a lot of messages from people saying their family and friends don’t really believe them or are minimizing what they are experiencing. I am not saying some physical problems can’t manifest from psychological issues. But if you truly understand where your head is at, and know your body well, please please don’t give up hope. It took me a lot of doctors (ones who minimized everything, one who called me a drug seeker, etc) to finally find a couple who I feel is really helping me get to the bottom of things. I know I still have a long road ahead but the point is, I never gave up. I wanted to. A lot actually. But I didn’t… because of my boyfriend and my family mixed in with some inner strength and a huge desire to LIVE.
I know this post is getting long so I am going to wrap it up. Without being too sappy, Frank, from the bottom of my heart, thank you. Thank you for recognizing a problem and not being afraid to stick to YOUR guns about it. Thank you for being so knowledgable (although I wish you didn’t have the experiences you did to make you that way.) Thank you for caring so much about the Crohns and Ulcerative Colitis community to not only bring us all together by pioneering Roundtable Discussions for online health activists and helping to educate the public about Inflammatory Bowel Disease, but for using all of the wisdom you have gained over the years to help me. To really and truly help me in so many ways.
“I want you to have good experiences with doctors and in a medical facility. I don’t want you to be scared.”
I want those of you who are experiencing so much right now to really and truly understand what I am about to say. As cliché as this sounds, trust yourself and surround yourself with people (as best you can) who are really there for you. Don’t allow the judgment from others who can’t fathom what it is you go through on a daily basis let you believe there is something wrong with any part of you – the way you think, how you feel, your reactions to situations….anything. You are you and you are the way you are for a reason!