Alannah-Jayne has had Crohn’s Disease
for ten years and a permanent ileostomy for nearly four years. She also
has a range of other chronic illnesses as well as anxiety, OCD, PTSD and
depression. She has done a lot in the IBD and ostomy community to help raise
awareness and provide support. This has included volunteering for numerous
charities.
Since being chronically ill, I was bullied on social media by so called ‘friends’
and others who knew of me. It first started when I was seventeen, I began to
get really unwell and lose a lot of weight. I was constantly running to the
toilet and often would spends hours on it or be throwing up. Despite that, I
tried to live my life like any other seventeen-year-old, going out at the
weekend, house parties, that sort of things. It became apparent that my
Facebook friends didn't like this and I got comments such as "you can't be
that ill if you are going out" or "drinking alcohol will make you
worse". I got the occasional "my mums’ friends’ cousin has it and she
can work" and I also got a hard time for being ‘lazy’ due to being so
unwell. I lost my job which was something I loved.
To those who bullied me, this is a letter to you:
During the treatment of steroids to try take down the inflammation in my
bowel, I had a common side effect called moon face and it destroyed my
confidence. On the outside I didn't let anyone know and carried on as normal as
I could. Then you posted pictures on your Facebook using the moon face emoji while
saying things like "here's my moon face lol" and laughing and joking
about it as if I was a freak.
Many nights I spent crying to my mum asking her why I deserved this cruelty
and why I had to endure the pain and suffering that I was going through. Until
the age of twenty, I went through various chemotherapy drugs to try and attack
my immune system, to stop it attacking my bowel and those hit me hard. I tried
to go to college and get qualifications towards being a nurse, but the
travelling and long hours spent on the toilet made it impossible for me. You told
my tutors things like "she's just skipping class, she isn't even
here" and when I had my first ever hospital admission, you said that I
went on holiday and wrote horrible tweets about me not attending my classes.
Did you have to spend those agonising hours on the toilet sweating with the
pain? Did you cry with the loss of my independence or feel the guilt of being a
failure all at once? You didn't see me cry myself to sleep every single night
in my hospital bed because I just wanted to be out of pain and at home. I
wanted to stop living my life in any bathroom I could find.
In 2015 I had emergency surgery to have my large bowel removed and an ileostomy
formed, also known as a stoma. Two days prior to this, I found out that this
was my only medical option left as all medications had failed and I was very,
very ill. I cried with shock and fear of going under the knife, so to keep you updated
I told you I had received some really bad news. At the time I didn't want to
share what that was, but you all used this as an opportunity to upset both
myself and my mum. We both received abuse and horrible things, you said I was doing
it for attention and the rest I will not even repeat. Did you know one of my
consultants came and sat with me that night whilst I cried, scared of what was
to happen?
When I uploaded a picture on my Twitter of me sunbathing with my stoma bag
out on display you said I had put you off your food. I don’t think able-bodied people
realise the impact this has on us and I wonder if your ignorance will ever be
changed?
From Alannah-Jayne
You can read more on Alannah-
Jayne’s (Glitterygutsx) blog where she talks about autoimmune diseases,
breaking stigmas and sharing people’s stories.
Have you ever experienced comments about
your disability from people you believed were friends? What would you say in a
letter to them?
