Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.
Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.
I’m Charlie. I am a mom of 3, 2 boys and a girl. A step mom to one and nan to a little girl. I’m a palliative care nurse and a wifey.
What is your invisible illness?
I suffer with Crohn’s disease
When did you first notice your symptoms?
I first had symptoms from around the age of 13 and they intensified the older I got.
What was it like getting diagnosed?
Sadly I was only diagnosed when I presented to A&E with sepsis, I had an operation called a right hemicolectomy which showed heavily diseased bowel. They removed a large section of small and large bowel then joined them together. Sadly the join perforated in 5 days and once again I had sepsis.
I had another open abdominal surgery where an ileostomy formed then a huge abdominal fistula. I spent 5 days in HDU and 14 weeks in hospital. I was commenced on crohn’s infusions
How does it affect your day to day life?
I have sadly lost my job and my whole life has changed. I am no longer able to enjoy what I did before & suffer crippling fatigue, bad tummy, sore bones and joints. Those have impacted on me being able to work or enjoy many things I did before.
Do people treat you differently because of your illness?
What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?
I would advise anyone suffering from symptoms of crohn’s to push and push their GP for testing and scans etc before it becomes life or death as it did in my case. Do not be afraid to pester and beg. It could save your life.
Do you know of any good groups or organisations of support for people with your illness?
What are your goals for the future?