On a scale of 1 to 10, 10 being the worst, how guilty does having this dreadful disease make you feel? Over the years I think I’ve definitely been a solid eight when it comes to feeling guilty about how IBD has affected me and my family. Along with the ensemble of symptoms, weight loss, diarrhoea, nausea, crippling stomach pain, fatigue, mouth ulcers, anaemia, joint pain, inflammation of the eyes, and then there’s the side effects of the heavy medication, joint pain, respiratory problems, numbness, tingling, liver problems, the list sometimes feel endless.
So, you would think with all the hideous symptoms of IBD, and the punishing side effects of the medication, then throw in the countless hours spent being prodded and poked, the regular ? repeated MRI’s colonoscopies…. Let’s face it, the list is endless, then why on earth would I then feel guilty about having this disease?
I mean, it’s not like I asked for the disease when they were handing out who got the chronic illness genes and who didn’t. I didn’t sign up for a life time of hospital appointments or the overwhelming feelings of anxiety waiting for my latest test results, but the guilt will not leave me in peace.
The Oxford English dictionary defines guilt as, ‘a feeling of worry or unhappiness that you have because you have done something wrong’.
Crohns disease isn’t the result of something I did wrong, nor is it something I should be ashamed of, but the feelings of guilt still linger.
The things I feel most guilty about…. first up is undoubtably food. I’ve been on the LOFFLEX diet since 2014, the diet keeps me in remission, so you would think that I’d have the will power to stay on diet and not cheat. I’m 90% compliant, but as we know when using diet to treat CD you need to be 100% compliant, so the guiltometer is steadily moving upwards. The guilt about not having the will power is compounded when I come across the smiling happy people that seem to thrive with such restrictive diets as the SCD, or plant based diets, their, “it’s easy, everyone should do this” Instagram posts make my guiltometer practically ping.
The guilt continues to flex with the way it affects everyone around me, particularly my wife and children. The fact that I sometimes can’t provide for my family, the financial inconsistencies of not working, the extra work my wife has to pick up, the fact that travelling is a huge challenge for me, constantly cancelling friends parties, feeling too unwell to watch my son play football or watch my daughter perform on stage in her latest role. I feel guilty about the close friendships I once had that no longer exist.
Having IBD is a life-altering disease with no cure and without doubt you are going to feel many emotions. It’s important that you can discuss these feelings with your friends and family. It’s also important that if you have the ability to speak to a professional you will gain the tools to cope with the ups and downs it brings us.
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