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  • Writer's pictureLucy Harman

Learning to grieve your old self

Autoimmune Diseases like IBD can have a debilitating impact on the way you live. I have spent the past 6 months learning to adapt and change. One of the hardest parts for me has been learning to accept I will never be who I was before I got sick, now that doesn't mean that I cannot do everything I did before. In fact, I think Crohn’s has given me the strength and drive to go out there and do whatever I want when I want, but there is no denying that my life has changed and I wont get the old Lucy back. It is easy to slip into a negative mindset and start to hate your new life. I spent many months doing that, in fact I still struggle with the sadness of knowing my life will always be like this now. But just like when losing anything important in your life, grieving is the 1st stage of beginning to move on.

Especially as a 19 year old just starting their adult life, it is exceedingly challenging having to adapt to a new life in which you are treated like an full grown adult from hospital staff and your doctors, but treated like a child by your family and friends now who just want to protect you. I now have to live around a timetable of treatment and doctors appointments, I no longer organise my life around holidays and trips out like many people my age do.

If someone has a cold I have to be careful being around them because it would take me far longer to fight it off than the average person would. Coughs can take weeks to get over for someone who is immunosuppressed like me, so I have to be far more wary and careful.

I now have 2 full time carers, my Mum for when I am living at home and my boyfriend for when I am at university. They aren't my carers because I am incapable of living my life independently, it's more of the fact that my organs are still in recovery from my severe flare up back in December and so I sometimes need help with things like cooking and getting heat packs and medication. I have always been very independent since I was very young and often refused a lot of help from my parents growing up, so now to have to ask for help feels like a sign of weakness.

My whole life I have loved organisation, I feel very stressed if I haven't planned my week. I can no longer do that because my disease is so unpredictable, I cannot pinpoint when I will flare up or when I will need to go into hospital. I worry every time I leave the house that I may have Crohn’s Attack, I may need help, I may need to get to a seat to relax or I may need to reach a toilet urgently. I hate saying no to people and now I am having to do that quite a bit. I am learning to understand that life will always be unpredictable and going out will always be a risk, but I will learn how to deal with it. Sometimes I will plan and it will be fine, other times I will have to cancel plans or leave half way, which sucks but people will understand.

One part of my life that I am taking a while to adapt to is the food regime. Unlike most people I cannot just pop to the shop and buy some bits and bobs, go out for dinner or grab a meal deal. I have to buy specific foods and try them for a week to ensure they will not trigger a flare up, ensuring to cook them in a very specific way which takes time. I find it difficult going on a day out because I have to plan very far in advance how I will be eating. I also struggle because when I go out with friends they often want to pop in for lunch and I cannot do that. Which often leaves me walking around alone whilst others are enjoying a meal. That I find very difficult.

Adapting to a lifestyle like mine can be gruelling and painful but sometimes you really do have to just suck it up and get on with it. But that doesn't mean I cannot still miss my old life and sympathise with myself. But like when you grow up, you adapt to a new normal, it just happens to be that my new normal will be VERY different. I think it is important to give yourself time and love, nothing is going to be easy and nothing shall come quick. Especially a drastic change like Crohn's. I have always struggled with being too hard on myself, I think its because I have a fear of failure. I give myself a tough time if I don't feel better as soon as I am on steroids, or if I get a flare up, I blame myself. Separating yourself from your condition can help to ease the stresses of guilt on yourself.

I try my hardest to consciously notice all the parts of my life that have stayed the same, like when I go out with friends, watch a movie or cook a meal. Those are the things that are important in life, the memories you want to remember. They will stay the same, as long as you don't let them fade behind the painful struggles of your disease. Try and be grounded by reminding yourself what matters, at the end of the day, do you want to go to bed thinking about a blood test or a family games night. There's no good without bad, no happiness without pain. Life will come with its struggles but there will always be light somewhere if you look. Focus on that. Remember that when times get tough.

Luce :) x

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May 25, 2021

While things may not be the same as they were, when I look at you, I still see the strong, gorgeous, feisty, AMAZING woman you are and have always been!! You never cease to amaze me and make me proud beyond words with how incredibly you cope with the challenges thrown your way!! Love you always and by your side no matter what 💜💜xxxx

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