A guy with Crohn's disease took to Facebook to bring attention to "invisible illnesses" after someone doubted the authenticity of his disability. Steve "Ste" Walker was at a hospital shop in Yorkshire, England when someone questioned him as to why he was there, since he looked "totally fine." Steven went home and posted about his frustration when people say things like this to him; living with Crohn's disease is incredibly taxing, despite the fact that it might not appear to be on the surface.
People are too quick to judge these days, just because I look normal and speak normal, that doesn't mean I don't have a major disability....to look at me I look like any normal guy my age, but that's because I want you to view me like that....look abit closer tho, or ask me questions, and you will soon realise that I have a major illness...
- I have a Hickman line, which is a line that comes out on my chest and rests in my heart. This is what is used to feed me on something called TPN as my stomach doesn't work correctly.
-I have a ryhlls tube down my nose and into my stomach to help drain it, because my stomach doesn't empty like a normal persons does.
-I have a scar that runs from the centre of my chest to the top of my pubic bone which is where I've been opened up 3 times in the last 2 years for major life saving surgeries.
-I have an ileostomy, or stoma as they are more commonly known, this is a section of small bowel that comes out of my abdomen which I then attach a stoma bag on to, to collect poo because inside my bowels it's full of chrohns disease, ulcers, strictures, fistulas, narrow sections, tumours etc.
-a normal person would have about 20foot of small bowel and 5foot of large bowel, due to all my surgeries I have 3foot of large bowel left and only 8foot of small bowel left. This cause major problems, short bowel syndrome (SBS) is one of them. This causes me to have a high output in my stoma which in turn dehydrates me, it also means I don't absorb nutrients from food (which is why I'm on TPN) and I don't absorb oral medications, liquids or tablets as all these are absorbed in the small bowel.
-I have a section of bowel attached to my stomach because my duodenum is full of strictures and active disease so my stomach doesn't empty threw it. The loop of bowel I had joined to it (gastrojejunostomy) was meant to solve this problem but because my stomach hasn't worked in so long it won't start working again so that's why I use TPN.
-all my medication are IV and I give them threw my Hickman line, this means at least I can use medication to help me cope, but the downside to this is it has caused one of the arteries in my liver to clog up. My kidneys are also not in the best condition as I am dehydrated constantly.
-then there's the conditions that I have got because of crohns disease, things like osteoarthritis in my knees from prolonged steroid use, gastro-paresis from not using my stomach in so long, chronic pain syndrome, anxiety from spending all my time in hospital, these are to name but a few.
-it's not just these physical conditions I have to deal with and fight everyday, there is also a mental battle raging inside me all the time, not been able to eat a meal in 2 years, or only been at home for 4 weeks in the last 18months, been away from my family and friends, seeing what my illness does to them has a massive effect on my mental state of mind.
So the next time someone says to me "well you look perfectly fine, why are you using that disabled toilet, or parking in that disabled spot, your conning the system, your not disabled, you don't need that walking stick" just stop and think maybe I just want TO BE FINE or to feel normal, you don't no what I go threw on a daily basis and you have no right to judge me just on your perception of me that you can see because you don't no what goes on inside.....so stop and think before you speak, think about the struggle I've gone threw just to get out of bed and get dressed and tried to look 'normal'.....
Sorry for the super long post but I needed to rant
Among other things, Ste discusses the tubes, catheters, bags, and IVs he has to live with, as well as the multiple surgeries he's received. He also discusses the psychological effects such intensive medical treatment has on him, and the scars his treatments have left him with.
He then concludes the post with "Sorry for the super long post but I needed to rant." No need to apologize, Ste. Seriously.