5 Lessons IBD has Taught Me
I wish we didn’t have to learn something from these bad things happening to our bodies. I wish we could sometimes just say fuck it, this sucks, and embrace that emotion fully. Unfortunately we would end up living out lives in a constant state of hatred towards ourselves and our said lives, just waiting for it to all end one day.
For most of us that cure is not going to come in this lifetime, that is just the cold hard truth. It is a realization that I have re-grieved numerous times. It's important to face that reality, feel through the feelings, and get to the other side. It's the only way to be able to fully accept a diagnosis, in my opinion. So an obvious lesson to be starting us off at number
Learning how to accept that this is a lifetime sort of thing.
Like I already said--no one wants to have a lifetime sentence to a disease. But there is no way around this fact, and until you look it point blank in the face--you will be in a state of unacceptance. What has worked for me in accepting this fate--is finding meaning in the suffering ie who I have gotten to meet because of my disease, or what life circumstances it has driven me to creating for myself. I also talk about the anger I have towards it in therapy, and having someone just to be a sounding board for it all is sometimes the best thing.
2. Some people will never get it and that’s ok, maybe they are just not meant to be in my life.
I have touched upon my childhood before, and of how I grew up without any friends. When I say that I mean it on a serious note not an exaggeration of any sorts. One day I will be able to write all about it--but for now that is the tidbit I can give you.
So when I first went back into society, aka high school, I was under the impression that other people would just get my struggles and accept me for who I was, because I never asked for any of this. Oh, how disappointed I quickly became when I realized just how much other people were not going to get it. I had to learn which people were worth investing my time into, and which ones it was ok to be upset about losing, because of course I could not keep people in my life if they were never going to accept how my life worked with a chronic disease.
There are some people who can understand it on an emotional and intellectual level, these are the people I have learned to rely on, and embrace the most. The rest of the people in my life I do not fully let in, because they can never put their mind in my body and see things from my perspective for a second. They lack the ability to make room for the fluidity of living with Crohn's, which I can respect.
This same thought process of allowing people in based on their acceptance and understanding levels also applies to bosses and jobs. Most roles will require some transparency to occur, where the only way it will work for you be able to keep the job, is if you let your boss in on what you are dealing with (to a certain degree). Whether you choose to share a lot or a little the same expectation is still there--they need to be able to understand or at least try to understand. Someone has to accept the fluidity and unpredictability and just get it if they are going to be your leader, if not then a lot of times the job is just not going to be for you in the end.
3. Good friends will want to celebrate all kinds of wins with you, even if they cannot fully understand what they mean to you.
There are some wins with a chronic disease that are just worth celebrating. Whether it is finally getting insurance approval on a medication you need, a new appointment with a well renound doctor, or finally hitting a personal health goal such as remission or a medication kicking in. These are all things worth celebrating and if you do not feel comfortable doing it with the current people in your life, then I do not consider them real friends. The people in your life have to be on your side and want to understand your own little wins. Because however sick you may currently be, these wins might be the only things you have going for you right now. If they can't share in your excitement, or want to understand more then it makes life with IBD that much harder.
4. No one knows your body better than you do--not even your doctor.
For a good portion of my life with IBD I had many doctors not understand nor believe in my symptoms. As a girl in her early teens, it felt like I was screaming from the top of my lungs with what was wrong with me but no one was listening, and no one in the medical field believed me. All of the testing they were putting me through at the time wasn't showing evidence to support what I was experiencing. I never stopped believing in my own symptoms though, it was this strong support of myself that allowed me to continue advocating for myself at a young age. It filled me with a fire to continue fighting because I knew in the end I would be understood.
It was not until my surgery, a whole year after I started to experience symptoms of fistulas, where everyone on my medical team could finally see what I had been experiencing this entire time. Only then did they believe me. Visual proof is the scientific devil to the patients well being in the medical field.
From then on out I knew I would always be able to trust my own body over the opinions of doctors. Which is never an easy battle to have since they are the ones with the experience and the education at the end of the day. But as I have proven to them over and over again, the one experiencing the pain is usually the one that will be able to better guide you on the journey of healing, than any medical tool or procedure. That is also why I make sure my medical team agrees to always listen to me first. If they can't, then I go on to find someone else who will.
5. It's not your fault.
Like none of this will and ever has been your or my own fault. We didn’t cause this, we didn’t eat too much ice cream, it wasn’t because we chose not to play sports, or because we have type A personalities. Since doctors do not have an answer yet of where these diseases in the IBD community stem from then we, as the patients, do not deserve to create another level of suffering for ourselves by believing we are to blame somehow for any portion of our disease, flares, or remissions.
I struggle with this almost daily, I always believe that I can somehow control my symptoms or what happens next. In all honesty, for the most part, we can't. I have learned that unless it is in an extreme situation, such as having an overly stressful job that is burning you out and causing you to have panic attacks daily which will then result in a flare (from personal experience) you really cannot know until you do. And then when you do know and you see what your body tells you, you then have data and information on how to live with your body for the next life time experience. It's not your fault you are in the flare, it is just your body communicating it's limits to you.
