This is what Chronic Illness really looks like.
I am Laura. I have Crohn’s disease. This is what Chronic Illness really looks like.
And this is my story.
About 5/6 years ago now, when I was 15/16 years old I began to notice that more often than not, I was feeling nauseous. Something in my heart told me that this was more than just feeling sick. I was going to and from the doctor’s office a few times a month trying to get answers. So many just brushed me off saying “Oh, it’s just stress, don’t worry it’ll go away.” I was throwing up food practically every single night and bile most mornings.
This was more than just stress.
I had real trouble trying to concentrate on school work and homework because when I came home every day I would honestly just go to bed and sleep, wake up and try to eat, and sleep again. In a cycle that would last a couple years. I was still going to and from the doctors, they were all scratching their heads, they had no idea what was going on. I was transferred to a main hospital site rather than just the GP office and they still didn’t know.
I lost a lot of weight and my school grades went south very quickly.
I was scared. Really scared.
All of the tests I had been through had so far come back negative, in theory I was a normal healthy kid.
And when the doctors say that to you, and tell you that there is nothing they can do for you, it really gets to your head. I’m sure I must’ve been depressed from all this as I still had no answer to my problem. I felt as though I was being a huge burden on my parents because they were always taking me to the doctor, taking me to get results, taking me to get medicines which made no difference, etc…
In some sick way I thought I was being punished.
Some people who I thought were my friends left me. “You never hang out with us! You always say you’re sick but you’re a lying bitch!” And that was that.
(Small back story to that point. I was about 18 at this point. They wanted to go clubbing and alcohol puts me through so much pain it just isn’t worth it, the times I went out and didn’t drink were not enjoyable as I looked after my ‘friends’ who were throwing up and they just did not care if I was having fun. So I stopped going out with them. And rather than them asking if I was ok, I got that response. But talking about them is not why I am writing so) This did not help my mental well-being.
At this point I must say, I had the best friends a person could hope for still by my side. You know who you are, and I am so grateful to have you and so grateful that you helped me and supported me through everything.
I felt as though I was (and still am actually) being very poorly treated by the NHS. Doctor’s simply retiring or moving country without informing me. Waiting 4 months for results. Being handed from doctor to doctor and not ever being treated like a real human being with real emotions. Everything sucked. And all I could do was cry and hope that something would change.
Several months ago I was diagnosed with Crohn’s Disease after new tests had found ulcers inside my small intestine.
Yes, it hurts and I still feel sick every day. But I have medication now and an answer to my problem which had been haunting me for years.
Though my story is not over yet. I was transferred to a hospital in the city and honestly, I have never been so badly treated in all of my life.
The doctor (who shall remain anonymous) was rude and inconsiderate. After talking with the NHS PALS group to discuss this matter the clinical director called me and we talked about a few things to do with my case and now everything do to with that matter does seem to be settled. I am moving myself to a different hospital in another city far from home where I hope to be treated like a human for once. If not, I do not know what I will do. I really don’t.
There is an 80% chance I will need surgery in my lifetime for this disease. There is no cure and no known cause. I have a chronic illness. Though I do not look ‘ill’ I am in pain and sick most every single day. And I am scared.
There are a few life goals which I have had to set back and rethink. But I will fight on. This will not stop me I swear.