I read an article the other day about a girl who got ulcerative colitis and eventually ended up with an ostomy. She expressed how she was initially upset about it, and one of the main things was how she felt regarding her boyfriend and their relationship. She expressed how her boyfriend didn’t “sign up to care for her” (or something along those lines) and after receiving the news that she was going to have surgery and an ostomy, how she had said to him;
“if you want to end our relationship then I understand”.
I felt how upsetting that was to read for me, for multiple reasons. To start with, yikes, it is scary that the thoughts go towards a relationship ending due to life-saving surgery, but also, mainly, because I could 100% relate. I remember the relationship I was in when I became ill.. he didn’t know me any other way. We met just as I started to get really ill and he was there through the full journey of trying to work out what was wrong with me, and during surgery, and post-surgery.
I remember, that rollercoaster weekend of trying to get my head around the idea of surgery, how I said to him ” will you still love me with a bag?” to which he replied, “of course Charlotte, I don’t love you because of your large intestine, that isn’t why I’m with you”. It was the best answer I could get.. but it was still hard to understand, and I’m not going to lie, in every relationship since then I have felt the same. I have had similar thoughts as the girl in the article.
“Why would he want to be together with someone who has a chronic illness?”
“Can he really find me attractive with a bag?”
“He could get any girl he wants. Why would he want me?”
“He could have a “healthy”, “normal” girl, why pick me?”
“A relationship with me must be one of the worst, what is he doing to himself?”
The list goes on and on, and those are just an example of some of the questions I constantly have running in my head, specially on the down days..
Yes, a relationship with me might actually be difficult, with all the ups and downs, the lack of energy and mood swings due to exhaustion and pain, fear and lack of control regarding my own body as well as emotions and the constant war my body is having with itself, and a struggle with being able to control myself, the way I act and feel with a humming painful body and a head in brain fog land and emotions seeping through all those cracks uncontrollably… But I also need to remind myself that everyone is human, and no one is perfect. No one can be perfect. I have dated guys who only knew the “new” ill/post surgery me, as well as who knew me before all of this, the younger “old” me. The thing is though, we all change, every one of us, all through life we change, we have to, unless we just sit inside and do nothing I guess, but it is growth. It is natural not to be the same as I was 10 years ago.. I guess it just feels like a much more drastic and dramatic change as it was such a huge “bang” kind of change as opposed to a gradual slow growth kind of change.
I am not writing this to get attention or as a “feel sorry for me” kind of post, it is a genuine thought process that goes through my head all the time, and I mean that, all the time. I can fully relate to what the girl was saying in her article, which by the way has a very happy ending as they did stay together and are now engaged.
I know many people don’t understand why these questions would even enter our minds or my mind, but they do. I have undergone major surgery, which has changed my life, as well as having an invisible chronic illness. No one ever thinks I am ill because I am lucky/unlucky and apparently always “look so well”. The fact that I try to get through life with a smile also makes people forget what is going on inside me, but smiling is my way of surviving. People also don’t understand the massive body image change and anxiety that goes through my head, always. Yes ok, I show it on social media, and in study/medical circumstances, and yes, I am so so grateful, however, we are all still victims of the media, and social norms and this is never shown in the media. An attractive woman modelling underwear for high street brands with a stoma isn’t really seen anywhere. Yes, it is on Instagram but that isn’t anything I saw before I got my ostomy. My body has changed, my body isn’t the same. A new partner won’t always know what it is, or have experienced it before. After all, it is a bag on our stomachs. Yes I have been lucky, and my partners have said they don’t even think about it, but I do, it is always in my mind, and surely they must think about it.. I mean, if they put their hand on my stomach it is there, if I am undressed they can see it clear as day.. and these things create anxiety and does get me down sometimes. It isn’t always easy thinking logically, and that “if they can’t cope with it all then they aren’t worth it”, all those thoughts I know I “should” think, vanish and are impossible to get back, no matter what other people say.
For me, these thoughts never go away, they are always there, somewhere in the back of my head, bubbling away, sometimes letting themselves be more heard than other times. I am just in the process, still, of learning to not listen to what they are telling me too much, to question their questions back instead.
Most importantly I am doing my best to remember that I am not my illness or my ostomy.
I am Charlotte.
I am a person.
I am me.
And to quote my dear Mormor, who fought with cancer for over 20 years, “I have cancer, cancer doesn’t have me.”
Yes, I have colitis, however I also have cats. I have an amazing support network. I have interests. I have passions. I have hobbies. I have love to give, and laughter to be heard. It is so important to remember all of that, to try to remember who I am at heart, deep down inside.
Anyway, I think this post has been very much a little safe place for me to just spit my thoughts out and remind myself about the value of me.
Thank you for reading.