The Bittersweetness of Chronic Illnesses

My name is Alannah-Jayne, and I’ve lived with chronic illnesses and mental health for as long as I can remember. I was diagnosed with my first chronic illnesses at seventeen years old, which was Crohns Disease and Ulcerative Colitis. Just to add a *trigger warning* here because I will be talking about near death and mental health issues.

The one thing that you are never told (when first diagnosed with any chronic or mental illness) is how hard it is to look completely fine on the outside but the inside tells a very different story with the difficulty that nobody can see it and very few will understand it. After years of suffering from the most horrendous pain I have ever endured in my life, many different chemotherapy drugs used to suppress the immune system (to tackle the body fighting healthy tissue and inflamming the part its attacking), I caught a strain of food poisoning which then led to sepsis as my body couldn’t fight it and my large bowel became infected from the combination of that and my Inflammatory Bowel Disease not getting better. This meant I had life-saving surgery for a stoma. For those reading who don’t know what that is or what that whole shebang is, I had my entire large bowel removed but my rectal stump (my bum) and then my small bowel was brought through my stomach, folded inside out and then stitched to its permanent home outside of my body. A bag then is placed on my skin, and I change it every few days and empty my poo into the toilet.

Now, I’m sure just reading that alone it doesn’t sound like much and you couldn’t imagine the years of hospital appointments, procedures, drug side affects, the sleepless nights, the tears i cried, the pain i felt, the mental side of it, the friends that left, the bullies that got kicks out of kicking me whilst I was down (so to speak), the family members that didn’t understand and then the people who would recommend all these different things like dietary advice, juice plus, exercising, “cures”.. the list goes on! It’s even harder when you look OK and people don’t believe you. You spend half of your time making sure you don’t look ill and the other half trying to get understood that you are in pain, despite looking well!

But, here’s the thing. It’s a hard bittersweet pill to swallow at times that, yes, my life was saved, and life itself is beautiful. However, there have been periods where i have wanted it to end. The things so many take for granted, such as going for a walk, being able to go shopping, going out with friends/family, being able to have a shower, and feeling refreshed afterwards. However, sometimes shit gets heavy. The medical PTSD, doctors gaslighting you, people making fun of your appearance, feeling like a drug addict because you are in so much pain and medical professionals or workers will make comments that make you feel like you are but inside you are in crippling pain.

My mental health issues started way before I was diagnosed with my chronic illnesses but were much more of a struggle afterwards. The worst impact on my mental health and for so many isn’t what I’ve been through precisely but more so other people and how I’ve been treated. It is an extremely hard burden on my shoulders to carry the years of trauma, domestic abuse, sexual abuse, narcissistic abuse which has been throughout my entire life (i will touch more base on having a narcissistic mother in the future), online trolls, online stalking and harassment, family members taking part in online bullying, people who I thought were my friends turning out to be the worst people I’ve ever come across and broke my heart to silly comments made to me without thinking. I couldn’t even put into words how much heartbreak I’ve been through in my life from the people who were closest to me at one time. This is why I’m not into hugging people much, I don’t want to be touched during my bad times and why I don’t sleep well. Of course, this is completely different for my son, whom I adore and LOVE to cuddle!

I’m telling you that if you feel that whilst yes, you are grateful to be alive but that life is hard and it can become tough, you’re not alone in feeling this way. You will go through periods of rough times, you will loose people who you never thought you would, you may always have questions left unanswered and lots of whys but I found that if you just find one thing in each day to keep you going and to stop you from falling apart, it makes it that little bit easier. We can not control what other people do or say, EVEN when we know it’s untrue or cruel or simply just to hurt you. That’s a fact. What we can do is try to move forward and try to heal. I don’t have any specific healing advice to give because I’m yet to find that.

So this is me taking the first step in trying to heal. I start counselling on Wednesday this week coming and I’m going in with a completely open mind and understanding that my trauma will have to be re lived, but knowing that with help and guidance there, I can hopefully heal from it. I’m working on sharing my story either through my YouTube or perhaps venturing into making my own podcast, which for now is TBC! I’m determined to make the best out of my negatives in life to be able to help others who have been through similar to feel less alone, heard, understood and to have a voice for those not ready to speak.


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