Inflammatory Bowel Disease for me growing up came with its own stigma other than the taboo of being primarily a poo related disease and that is put plainly the word disease.
According to the Oxford dictionary the word disease is defined as:
“A disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of a physical injury”.
I got sick at the age of 10 and was diagnosed around the age of 12 with Ulcerative Colitis and there has been so many parts of growing up chronically sick that were difficult; but there was one thing that really was hard for me to deal with. That was the word disease.
I was about to embark on my teenage years with an incurable disease and it made me feel so dirty. I associated disease with visually ill with blisters and necrotic limbs. I know that sounds ridiculously childish but at that point I had only really heard of those awful ones like leprosy. I thought everyone would know that I had something wrong with me even though there wasn’t any way people would know unless I told them.
Well, that was until the steroids made my face swell up and gave me an awful mixture of hamster cheeks and moon face. I also had a rather insipid tallow tinge to my skin which made me look like I was jaundice. I think a lot of people thought I was either making myself ill or faking it; it was a really lonely time to be sick and spending most of my time either off school or in hospital. In the early 00’s when I got really bad, we didn’t have social media heck even MySpace wasn’t a thing at the time.
I had a couple of friends that would visit when in hospital but in all honesty I hated getting visitors in hospital; people saw me actually sick. Although typically being young and having an invisible disease that wasn’t as well known as it is now meant I had a lot of staff treat me like a hypochondriac. After a while whenever I was in a flare the word disease hung in the air like well like a farmer spreading muck. I felt ostracized and I had nobody that could relate to how I was feeling.
I still have this issue even 20 years on about using the word disease which is silly really. I just call it a condition because pretty much every Tom, Dick and Harry have a condition nowadays and no one bats an eyelid. The connotation from being something disgusting to something to pity was a shock and if I’m honest I’m now not sure what was better! Yes, I have ulcerative colitis and yes, I have a permanent ileostomy but that only took the active disease away; the ulcers. Not all the other issues that go along with it. I also have three other chronic health conditions that are actually conditions; fibromyalgia, PoTS and hypermobile Ehlers-Danlos Syndrome. These are the conditions that should cause pity for pities sake not the stoma and that is because I can pass out as my blood pressure drops, my joints like to pop out as the connective tissue is too loose and the total body pain, I get is horrendous. These three conditions are why it takes me an hour to get out of bed on a morning, why I am so snappy because I haven’t slept properly and why I am on autopilot till I’ve managed to get the kids to school.
Yet it is the disease and the fact I have the ileostomy that receives the pity; the fact that I’m “so young” or the comments about crapping into a bag and how they would rather die than do that. The idea of having a bag when I was 21 was horrible and I did say I would kill myself if I woke up with one. Yet when my body was actually shutting down and I was barely existing I knew that I needed to have a stoma. This photo was taken the morning of my stoma surgery and even though I don’t look “ill” (what does that actually look like anyway?) I was so unbelievably ill and in pain.
My life has been what at times felt like an uphill struggle and having stigma and taboo around words for things we all do i.e., poo or things that a lot more people have been affected be such as disease. I often think what would my life have been like if I was able to be open without the worry of backlash.
I know I am not the only person who the word disease has made feel dirty as I have a friend who recently confided in me about their own auto immune disease that barely anyone knew about. They felt that people may not understand and they were already embarrassed about it. It hurts when you know you are not alone; not because of needing to feel special or anything but that I understand the pain they feel. That they have been alone too when they didn’t have to be. There are so many diseases that aren’t invisible like mine was; I say was because my ileostomy when on show is what now makes it visible.
Disease for absolutely certain needs to lose its stigma especially as according to my internet searches the only contagious disease is HIV and the AIDS variant and its viruses that are contagious like the cold/flu or even to keep it current COVID. You aren’t going to catch Inflammatory Bowel Disease from me nor were you ever going too! The same goes for things like cancer or Alzheimer’s you aren’t going to catch it but you know you should stay away from people with a disease if you have a cough, cold or the flu you have the possibility of making us severely ill especially if they are on immune suppressants.
Hopefully in time the word disease will lose it’s stigma and that hopefully would mean people will be able to access the support and help they need to ensure their lives are manageable.