Whether an invisible or visible disability, this question is something that understandably sparks a lot of thought, discussion & personal reasons for the individual.
The views you will read in this article are mine only so please remember this is just how I see it. They are not medical guidance or otherwise and I am not speaking on behalf of those with disabilities. Everyone has their own views. As always, please consult a medical professional or legal professional for help with the things in this blog post before acting upon them. This blog post is merely how I interpret things combined with my experience of living with Inflammatory Bowel Disease (IBD) & a permanent ileostomy.
What defines “disability?”
Under the Equality Act 2010, you are “disabled”:
“if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”
It then explains how substantial is something which is not minor, such as taking longer to complete a daily task and that long-term means 12 months or more.
The definition “disabled” is used widely, so is often interpreted differently by different people and is one that needs looking into in situations where you may be covered, even if you don’t initially think it. Some impairments such as being partially sighted or if you have been diagnosed with cancer mean you are automatically included under the Equality Act 2010.
Does having Crohn’s Disease mean I have a disability?
Again, this is something that can be different depending on who you ask. Some people may feel that their IBD is classed as a disability where as some may not. In my opinion, there is no right or wrong answer as to where you feel you would categorise yourself in day to day situations. I guess where potential problems lie would be how the law sees IBD or how different people, perhaps without any experience of a chronic, long-term illness, see it.
The politics of this question are vast & complex & can often be very unclear & sometimes conflicting. Some people may not feel comfortable being classed as “disabled”. Again, this is just the terminology I am using, so please feel free to alter it as you see fit for your own understanding & feelings. I personally find it really hard to answer this question so I’m going to explore my views.
When looking into this question online, there are lots of resources which state Crohn's Disease is a disability in the eyes of the law if you fit certain "criteria" and explains you may be entitled to different types of support such as income support, where as other resources seem to suggest that the severity of the disease will determine whether you are viewed as "disabled" or not & that you may find it harder to obtain such support.
Do I feel I have a disability because of my stoma?
I actually felt more disabled, as in less able to do things, before my surgery in 2011 and early in my surgery recovery. Crohn’s Disease felt like more of a disability to me when it was flaring & robbed me of many years of my life. I had no quality of life and felt like I just existed in agony & misery, watching everyone else live busy & full lives around me whilst I had no option but to watch mine pass me by so uncontrollably. I couldn’t hold down going to college full time when I was 17/18 where I studied Child Care, Learning & Development & had to have my placement hours (where I voluntarily worked in a child care setting as part of my course) dramatically reduced to enable me to get through the course without falling severely ill. I had to go for drug infusions, somehow find time to rest & actually want to rest whilst being in agony & complete coursework whilst flaring. I missed out on a lot of school time when I moved up to Junior School when I was 7/8 due to my Crohn's diagnosis and everything that followed & definitely didn't do even half the things you should get to experience as a child.
Now, I use a disabled toilet when I need to empty my bag more urgently away from home or have a bag leak & need more space & privacy to lay my things out to change. The looks I’ve too frequently got when leaving a disabled toilet are a topic for another day, but let’s just say people are often way too quick to judge. I also have times where I have to adjust aspects of my life for elements of having a chronic illness such as experiencing different levels of fatigue. Having a stoma isn’t a magic fix unfortunately but my stoma has given me so many things including my life, freedom & so many new opportunities I could only dream of before it, such as working with Comfizz (pictured above).
What others things about stoma life impact me?
I also have an NHS medical exemption certificate as I need to wear a stoma bag permanently. I have no control over when I poo or how much comes out at once and the same goes when passing wind. I have little control over the consistency of my poo either although I can manipulate this luckily when needed most of the time and sometimes it’s just pick of the draw as to what it’s going to be like. Some time there is no rhyme or reason as to why my output is thick and slow then others watery and flushing through fast. Having a stoma can still have unpredictable elements but in the 9 years after surgery I have become better at dealing with these. It’s still often hard & things can catch me off guard & affect me mentally.
With being able to pass waste a major bodily function, I now do this via my stoma because my bum has been sewn up as I’ll never use it again. This is obviously a significant change to my body. I also have to watch what I eat to some extent.
I also get anaemia down to not being able to absorb iron as well which can lead to requiring iron infusions.
Scar tissue caused from surgery also causes me pain infrequently and unpredictably, but when it comes its often horrendous and hard to push through. It’s also changed how my organs in my pelvis are aligned, especially my reproductive system and my left ovary is matted with scar tissue.
I also get very tired and achey but it’s hard to decipher what proportion of these things is down to my Crohn’s, my stoma, both or just part of life.
I do adjust my day depending on how I am with my illness & having a stoma can impact my daily routine to varying extents.
Having a disability doesn't have to be seen as a bad thing
I feel like there is so much more awareness to be raised & discussions to be had to help reduce the stigma some of society still has over a disability being negative. Admittedly, it seems a lot better than it used to be but so often we focus on what things have taken away from us rather than what they have given us.
My stoma not only changed my life but it saved my life. It gave me so much freedom, joy & new opportunities. It has given me friends, more resilience, strength, courage & the ability to find out what makes me the person I am.
My stoma has enabled me to live.
Until next time,