The impact Crohn's has had on my relationships.
Being a lifelong Chronic Illness, Crohn's Disease is bound to have an impact on your relationships, I am very lucky to have the biggest support system in the world constantly looking after me and keeping me smiling every day. But I have noticed an impact on my boyfriend, friends, parents nevertheless.
1. My Boyfriend
Tom is the best person in my life, to be thrown in the deep end and have his girlfriend be diagnosed with an incurable disease at just 18 in the middle of a pandemic when he’s half way across the country, he has been so mature about everything. He calls me every single day and has been nothing but supportive. In a way, Crohn’s has brought us closer, as it’s made us be much more open about feelings and we are constantly checking in on each other. But it’s had its struggles, mostly caused by the shielding, not being able to see him after my diagnosis was hard enough, but to then not get to see him for months after that made this even more difficult. It has made us stronger as a couple and shown us if we can get through this, we can get through anything. Tom has only really known me whilst I’ve been ill, so go him the diagnosis hasn’t changed me, it’s just put a label on it. When I moved to uni and met him, I started to get Crohn's symptoms and from day one he was amazing at dealing with it, he helps me out massively and is so understanding.
Something that’s been hard to deal with for me is feeling like I am a burden because of my Crohn's, in a way those who you’re closest with become your careers because with IBD you can’t always do things for yourself when you’re in the middle of a flare up. It’s totally off their own back but to me it feels like they’re forced into it. Before my diagnosis I hid a lot of symptoms from Tom and my family because I was worried and scared, but after being so ill in hospital we agreed that I would be 100% honest and open about my symptoms and problems. Because I am newly diagnosed and still in my first flare, we both find a lot of comfort in the fact that it won't always be like this, hopefully at the end of this month I will be back at uni and next year we move into an apartment together. Like most IBD fighters in a flare up we look to the future to help us push through.
"The longer you wait for something, the more you'll appreciate when you get it."
2. My parents
My parents have been so amazing since my diagnosis, I have no idea what I would have done without them but there’s no denying it’s been a struggle for both them and me. Being the youngest child, who had only just left home to go to University, both my Mum and Dad were suddenly forced back into becoming full time carers. None of us 3 kids had ever really had any proper illness problems, so my very rapid diagnosis was a massive shock and we didn't really know how to deal with it.
My mum and I have always been close but Crohn's has brought us even closer together, she spends most of her day with me and every Thursday and Saturday we watch Ru Paul’s Drag Race together. It is hard for her because she is trying to balance her job and caring for me at the same time as also being a mum to both my brothers. Luckily both my parents are working from home at the moment, my mum is self employed and my dad’s work is very understanding that sometimes he may have to take time off to take me to hospital appointments.
Over the past 2 years I have become very independent and stopped relying on my parents as much, I got a job, got a car and moved out to go to university. So for me, to suddenly have all that independence taken away and have to rely on their help as carers like a child again, has been very difficult. My medication can make me very emotional and snappy and I find it hard because that's often taken out on my mum, simply because she is always around me. But luckily she understands it's not me, it's because of my treatment and the stress of being diagnosed with this disease. Where I am 19 and in the middle of a pandemic, I am technically now an adult according to the NHS system and so I am treated like an adult in hospital. My mum can't come into my hospital appointments, or call up GPs to ask for help, I have to do everything myself. We both find this difficult because even though I am very mature and don't technically live at home anymore for the majority of the year, I still am very close to my parents and rely on them for support a lot. I don't mind going into hospitals and ambulances alone, I know my mum finds it hard watching me leave by myself because every time we have no clue how long I will be in for, but what I find the hardest is trying to navigate my way around hospitals alone! I get so lost! I am very thankful to have them and am lucky that we are both in situations in which we can be back at home together during lockdown.
"No matter how old you get, sometimes you still just need a hug from your Mum and Dad to make it all better."
I have the best group of friends in the entire world, they are all so lovely and I miss seeing them so much. Unfortunately because of the pandemic I haven't seen one friend since my diagnosis, which is definitely difficult because I am a massively sociable person, I hate being alone. I have had hundreds of messages from new friends, old friends, friends of friends and even strangers with messages of support. People may not realise how helpful it is, but even a simple ‘I hope you're okay’ and ‘I am here for you’ can make my day just that little bit easier.
One way in which my relationship with my friends has been impacted is, I have noticed a change in tone, it feels like everyone pities me and doesn't really see me as Lucy anymore. Yes, I am now very sick and sometimes I do like to talk about my Crohn's, but that doesn't mean I don't still live a normal life and have normal things to talk about. I appreciate the sympathy and it really does mean a lot to know that people are thinking of me but sometimes I just want to feel like the old me again so just a normal conversation would do me the world of good. Another way in which my relationship with friends has been impact is that a lot of old friends I lost contact with and friends that I was never that close with, have come back into my life and have offered amazing support. I find it comforting that so many people are thinking about me and it fills me with so much love and happiness. Sadly I have also lost friends as a result of my diagnosis, a few haven't been supportive whatsoever, which I always find difficult when I thought they were some of my closest friends, but my real friends who care for me have definitely made up for that.
There really isn't much that we know about Crohn's disease, it's a very unknown condition and that's difficult to deal with because there is no one treatment that works for everyone. Something I find hard is people giving advice, I know they're just trying to help but being told that essential oils and rocks could cure me feels like a kick in the face, it almost feels like I am being told that I am not working hard enough to get better. I do love getting advice about how to feel more positive and how to deal with pain and symptoms, it's only when I am told that things can cure Crohn's when I know it's just not true.
"True friends are never apart, maybe in distance but never in heart."
What people sometimes don’t think about is that, just because I am the one who has this illness, doesn’t mean I’m the only one who needs to be supported. My friends, family and boyfriend have all felt the pressure of this diagnosis and I try to support them all just as much as they support me.
I am so lucky to have the support system I am blessed with, and I cannot wait until shielding is over so I can see them all again.
Luce :) x