Something I have noticed during my time as an IBD hostage (inflammatory bowel disease), is that when people talk about IBD they talk about their physical symptoms. So you will often hear people talking about the urgency and frequency of needing the toilet, the crippling fatigue, the bleeding, the abdominal pain, the weight loss, the loss of appetite, the anaemia, the vitamin deficiencies, the low immunity, the side effects of immunosuppressant medications, the joint pain, the ulcers, the noises and probably lots of other things I’ve omitted to mention here.
What has struck me though, is the distinct lack of talk, about the fact that this type of chronic illness literally touches every single part of your life. It leaves no stone unturned, and discriminates against nothing.
When I say that, I’m not talking about the physical impacts on a persons body. What I actually mean is emotionally!
I’ve been thinking about writing this post for a while now, but have struggled to know where to start. It’s such a massive subject, and it’s generally untouched (probably for that exact reason).
I want to be clear and concise so that I help you, the reader, to truly educate yourself in the far reaching depths of this type of diagnosis. But also if you are a reader with an IBD diagnosis, I want you to feel validated and to know that the things you feel are real, relevant, and completely normal when you are trying to simply survive in a life like that. I use the word survive deliberately, because the word live/living is not appropriate in the context. You are merely surviving, and that is exactly how it can feel!
Because of the sheer scale of what I am going to share, I have decided that I am going to make this a series of posts in its own right. I want to give the subject the space and detail that it deserves, and at the same time give you, the readers, the chance to digest the information, without it becoming overwhelmingly intense or boring. We don’t want you loosing interest now, do we 😉.
So for the foreseeable future, every Monday evening from now on, I will cover a different emotional impact of IBD. If you have ideas for an emotional topic, or would like to share your own experiences of any of the following ‘Price Tags’ please get in touch!
On that note I’m going to begin Week 1 of the series, by talking about ‘Guilt’.
GUILT…
The most important thing to remember when I talk about these subjects, is that they are my experiences, and those of the people closest to me. It does not mean your own experiences are any less significant if you don’t feel this way. However, if you do identify with some, or even all of them, then I hope you find some comfort in the fact that you are not alone. Nor are you a terrible person for feeling, or indeed not feeling, that way.
The guilt I carried throughout my illness was without doubt the most challenging emotional battle I faced. I felt guilty on absolutely every level. I could tell myself a thousand times (and probably did) that there was nothing I could do about it, and that I had no power in this situation… But then not only did I feel guilty, but I also felt hopeless. Hopelessness is a whole other topic, and we’ll cover that on a different Monday Price Tag post.
My guilt began with my work, strange I know, but up until that point I was still holding things together, by the finest thread, but together. The world came crumbling down around me when I got off the train in Telford and Bernie (my husband) took one look at me as said something along the lines of – No more, you look half dead! What followed was the beginning of my guilt. I had to take three months off work to try and regain some strength and try out my first set of medications.
I’d never taken any significant time off work, and if it hadn’t been for Bernie, I probably wouldn’t have done, until I dropped down dead. I spent the next three months laying on the sofa, or in bed, and when I wasn’t asleep I was consumed by the fact that my clients weren’t getting my support. That I had let them down, that they were going to become unwell again because the one person in the world who believed in them had vanished and left them out to dry. I work with people who have life-long severe mental health needs, so continuity and trust are absolutely crucial to their recovery, so my guilt was not completely unfounded. However, I knew that my team wouldn’t let my clients suffer, and I knew they would be well supported whilst I was off, but then I just felt more guilty as they were having to carry my work load too. And there I was lying on the sofa 😳.
Next came guilt around my children, we cancelled our summer holiday. I missed the first year of Beanie playing football for the local U13’s team. I couldn’t go and view colleges with Pippa. I couldn’t take them to school or pick them up. I couldn’t go anywhere to celebrate their birthdays. I missed a trip we had planned for two years to Harry Potter Studios. They worried about me when they saw me so tired, even though they didn’t say it, I could see it in their eyes and feel it in their cuddles ❤️. We couldn’t go and visit family like we used to, we couldn’t go out for dinner like we used to, I couldn’t even cook dinner for them like I used to. I begged Bernie to take them on holiday so they wouldn’t miss out, but he, nor they were having any of it – ‘No mum we’ll do it together when you are well again’. At the ripe old ages of 13 & 14 their lives were on hold, and it was all my fault. Of course I knew there was nothing I could do about it, of course I knew it wasn’t my fault, but recognising that just made me feel – you guessed it – Hopeless!
Bernie was holding together his business, but things were starting to suffer. People who had worked with him for a long time, started to take advantage. They saw his foot was off the gas and used it to their benefit, and it was all my fault. He was preoccupied worrying about the reality of loosing his wife, planning what life would be like without me. He was doing all the school runs, looking after the children, doing the housework, cooking the meals, trying to make life as ‘normal’ as he could for everyone’s sake. In the meantime he was suffering emotionally, I knew it, but I couldn’t face it, I wasn’t strong enough. I couldn’t bear the thought of him falling apart and it being my fault. I work in mental health, I understand the critical importance of sharing and talking,yet I couldn’t. I was being selfish, I needed to preserve what was left of me. How awful is that, but it’s true, I couldn’t do anything but watch as he carried on, tired, sad, lost, angry and most of all silent. He rang me every single day from work to check in on me, check I had eaten, see how I was feeling, check I was still alive at some points I think. And all that time I was ignoring how he must have been feeling.
Yes, yes, I didn’t ignore it on purpose, I needed to concentrate on me, I needed to get well again, I needed to be as stress free as possible (look up Colitis and stress if you don’t understand the connection), but even so it just made me feel guilty, and then obviously, when I watched him holding it all together, unable to do my bit, along came, yep – the hopelessness.
When my family visited I could see the fear in their eyes each time they saw me. I could feel it in their hugs. However, everybody smiled and told me how well I was doing. I felt guilty because I knew I wasn’t, and I knew they were worried beyond words. I felt guilty because they wouldn’t (or couldn’t) talk to me about it. I wanted to console them all, but I couldn’t, I knew they were right to worry, but I didn’t have it in me to have those conversations. Guilty and hopeless yet again.
My Mum, my poor mum. There she was caring for Gary (my step-dad), as he returned home from ICU, unable to visit me. I knew she’d be feeling guilty about that. So I felt even more guilty because I couldn’t do anything to make it better for her, and I couldn’t be there to support her when she needed me most. Ironic really as we were both feeling exactly the same way. The reality was however, that neither of us could do anything about the situation, we just had to keep going. Gary needed her there, and I had Bernie here for me.No matter how much logic you apply though, it doesn’t stop the guilt!
There are thousands more ways in which I felt guilty, and looking back I know I couldn’t do anything about it. I also know that nobody believed that I should be ‘doing more’ or ‘trying harder’. But even with all the facts and rational that good health is bringing me now, I still feel guilty on all of those levels, and I probably always will to some degree.
What has changed though, is that I can accept it now, I know it was part of my journey, and I’m doing all I can to make up for the time that I, and everyone around, me missed. I’m not anywhere near as hard on myself as I used to be, and I’ve had all the conversations I needed to have, in order for everyone to know that I’m sorry, and that I love them all and am more grateful than I could ever express for the support they all provided whilst I was –
Away from reality!
Guilt, what a shocking price tag hey 😢
My ileostomy and me 
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