What I wish people understood about having a Chronic Illness

Until it happens to you, you can never truly understand how having a Chronic illness feels. Unlike many Crohn’s fighters, I did not suffer years of struggle before my diagnosis, one minute I was bubbly energetic Lucy with no worries in the world and the next I was unable to move on a hospital bed. You never expect to get such a debilitating illness aged 18, but you have no choice but to just keep going. One of the hardest parts is feeling like no one really gets it, when people ask if I've recovered yet, I have to go through the whole process of explaining that I will never recover. Because of lockdown I haven't been able to go and meet people like me yet but talking to people online who understand is incredibly helpful.

Chronic diseases are defined broadly as:

‘Conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Which in most cases cannot be cured, only controlled, and are often life-long and limiting in terms of quality of life.’

Here are 5 things I wish people understood about having a Chronic illness:

1. There is no cure

I am constantly asked if I have recovered yet or when I will ‘be better’, which I know is because not many people know much about Crohn's disease but it can be quite difficult always being reminded of the lifelong element of your disease. It is also hard to say that I don’t want suggestions about what to do but I’ve researched this more than anyone, I know my own body, and I know what my options are. I will be ill forever, and only scientists and doctors will be able to change that with research. So as much as people are only trying to help, there is no cure.

2. Everyone is different

Not one case of Crohn’s is the same, everyone reacts differently to treatment, everyone has different symptoms and triggers and everyone is impacted differently. It is so lovely to hear about other people with your condition as it helps you to realise that you are not alone. However, what can be quite hard, is when people question why your condition or reaction isn’t the same as their friend with Crohn’s, making a big deal about the fact that their friend never did a Liquid diet or their friend had to have their organ removed, almost feels like it’s invalidating your condition and questioning it. No one is the same. Which is why this disease is so difficult for doctors to understand.

3. Just because I don't look sick doesn't mean I am not.

Fighting an invisible illness is extremely difficult both mentally and physically. A lot of people don’t understand that just because I am smiling and seem cheerful, it doesn’t mean my Crohn’s doesn’t exist anymore. Infact, most people with hidden disabilities and diseases will hide their symptoms more often than showing them. I decide to be open about my condition to help others feel like they can too. I am a very smiley person and unless I live with you I am very unlikely to show you my pain in public because I like to keep up my happy persona. There’s been a few times in which I have posted a picture of myself online smiling with my family or playing with my dog and then a few hours later post an update saying I am flaring up and hence have to go to hospital. Sadly, a minority of people have questioned the truth of my condition because they simply don’t understand how someone could look happy but be so sick.

4. I'm not lazy

My biggest worry with missing out in my education or in social situations is people thinking I simply do not care and am lazy. I have never been one to slack, I always put my all into everything I do and am very hard working, so suddenly to not be able to do that, makes me worry people will think I am just becoming lazy. Chronic fatigue isn't just feeling tired, to me its like a dying battery, I slowly run out of energy, flicker a few times and then am completely bed bound. It is very noticeable in someone like me, because my whole life I have been known as the bubbly energetic one, so to suddenly be completely exhausted is extremely obvious. My fatigue is down to low iron levels as a result of my malabsorption because of the inflammation in my intestines. There is an actual deficiency that causes it, it isn't just because I didn't sleep enough.

5. Just because I have this illness doesn't mean I'm not still me

Crohn's has definitely changed who I am, there's not doubting that. But I am not just a patient, I am a person, I am not Lucy with Crohn's, I am Lucy, who just happens to also have Crohn's. I can still have normal conversations, have fun and be me. Its natural to be sympathetic towards someone with an illness like mine, its horrible to see someone go through it, but talking to me like I'm normal can also help because it makes me feel like I am Lucy again and actually have a normal 19 year olds life.

Luce :) x