Hey Crohnies and Lucky Coiners,
I have to say I had a bit of a shock yesterday morning when I opened my mail to this…
I’m excited to have something to look forward to, but it’s also bittersweet because I’ve been allocated 4 tickets for family so Stuart, my mum and my dad are coming but I’ve decided to keep my last ticket spare as it would have been Duncan’s. I certainly wouldn’t be in this position without him and with it being 6 months now since he passed it really just gets harder to not talk to him in person about things I used to take for granted. I never knew it was possible to feel so lost without someone, it’s not something you think about when you’re well but considering how we went everywhere together and he looked after me so much, I can’t believe every big milestone in my life like this awards ceremony he can’t be there and it is something that makes me so sad and so lonely since I don’t have him. It makes me think of the quote:
“How lucky I am to have something that makes saying goodbye so hard” -A.A Milne
While I’m on the topic of loneliness I thought I’d do a bit of a post about how lonely and isolated you can feel when you live with an invisible illness. Due to the nature of them being so unpredictable (I went out for Stuart’s birthday yesterday to the science centre and leaked 4 times!) to now feeling done in today because we walked a lot more than I’m used to, I now have to have a lazy day because I’m fatigued and due to my Crohn’s and my skin round my stoma being all cut and sore again.
Looking at me it’s very easy to forget I’m sick but I find a lot that apart from my very close group of friends (seriously I’m ridiculously lucky to have my best friends) and my immediate family that I either get told I’m “lazy” or they don’t want to be around me because a lot of the time I’m not exactly a ray of sunshine because I’m still depressed and I have awful anxiety that can give me panic attacks so severe I can be sick with being worked up. I get the impression off a lot of people that I’m a hindrance to them, this has been made to be more in the forefront of my mind recently when I consider how isolated I feel when I realise some of my friends and not so close family haven’t spoke to me for months when they used to before I got my surgery.
I know from talking to many people with invisible illnesses that most of them feel at least slightly lonely and alienated from friends or family and this is something I plan on addressing through having this platform and through meeting a lot of influential people who can help change this perception but really this starts from you. If you feel like you’re not exactly there for a friend or family member who has some kind of illness then you should really try and change that.
I totally understand that people have lives to lead and I wish I was one of them but I am really struggling especially when I am missing my best friend so much and with having to be at all those places which caused both him and I pain, like the hospital where he had his surgery and we were told Duncan was terminal. Every time I go there it’s like being taken back and the feelings I had at the time we found out about Duncan and even the terror I feel when I think about how seriously ill I was too after I had surgery and the sepsis started because let’s face it, survival rates with sepsis just aren’t that good.
It’s not always so easy to emerce yourself in social situations when you’ve got an invisible illness, not just IBD or Crohn’s because you struggle to get out of bed some days or you might have to cancel on meeting people but that is not your fault and you are not alone. You’re still going on every day with something that most healthy people cannot even comprehend so I just want you to know that sometimes…
“Courage doesn’t always roar. Sometimes courage is a quiet voice at the end of the day saying “I will try again tomorrow.”” -M. A. Radmacher