29 September 2015

I have a disability; there, I said it!

I think it's fair to say that people with invisible illnesses spend a great deal of time trying to convince the medical professions that they are genuinely sick and are in desperate need of the extra support that we find ourselves asking for; after all we know our bodies the best so know when something isn't right. Believe me when I say that individuals with chronic illness will only ask for extra help and support when we genuinely need it. Think about it....if you spent so much of your existence in the hospital/ attending appointments, would you then go and spend even more time in the waiting rooms? I think not; so why do we struggle to get people to believe us when we are genuinely sick. "You don't look sick to me" jeez thanks a bunch, in which case just discredit my burning internal pain seen as I've gone out of my way to brush my hair so that I do not offend anyone as I stroll on by. Maybe the lack of compassion from the medical profession is down to being rushed off their feet or having encountered troublemakers in the past and therefore are cautious about making the same mistake twice.
Why do we even need to convince people in the first place you may be asking. Believe it or not... try as we might, we're not indestructible. For the most part individuals with chronic illness simply plough on through life making the most of things. So when someone is reaching out asking for extra help the least you could do is be a little supportive. It seems so silly that we have to make it so glaringly obvious that from time to time we/ I will need extra support, whether that be emotionally, mentally or physically. There will be times when I turn to friends or family for extra comfort, these are the times that I am struggling the most so please don't make me feel even worse by having to explain in great detail why I need your support. 

I have attempted many times to open up to close friends about my illness and at times I thought that we were making great progress. I understand that there is no manual for being friends with someone who has a chronic illness and I understand that at times it must be tough but just when I feel like we are on solid ground silly remarks pull the rug from under my feet and it feels like we are straight back to the start. 

'My journey is not the same as their journey' I find myself explaining one evening. I can't express how frustrating it is when people compare individuals with chronic illness or how judgemental people can be to those with invisible illnesses. "My friends cousin has that illness and he gets on with things just fine" "Someone at work has the same illness and they work full time" okay great, point duly noted.... what about "My friend has that and is in the hospital fighting for their life". Yes exactly.... comparing chronic illness is a silly thing to do; it benefits no one. I believe that these things aren't said out of malice and friends/family feel like they're trying to encourage us, when in reality they're just making me feel worthless. Don't you think that I am doing the utmost to tackle my own journey with an invisible illness? Do you feel that I'm simply not trying hard enough? 

"Yeah but like you don't have a disability do you?"
'You're disabled under the Equality Act 2010 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'- Extract from https://www.gov.uk/definition-of-disability-under-equality-act-2010
Both Crohn's disease and Ulcerative Colitis do fall into the remits of having a disability. Surprising as it may seem a person can be seen as having a disability despite having all of their working limbs in place and none of their senses missing (common sense is omitted from this example). "I don't want to be seen as having a disability; I don't want to be treated any differently to others". Great news, there are procedures in place which hopefully prevent a person with a chronic illness being treated unfairly or being at a disadvantage to others. Personally I have no issues with declaring myself as having a disability if it means that I am given the same level playing field as others. I am no less able than the next person... providing that provisions are put into place for me. 
Despite my gutsy attitude to tackle whatever comes my way, I too have to be realistic in accepting that there will be days when I simply cannot get out of bed, or days that I will have to give up as I need to spend time in the hospital... on these occasions I am thankful that I can class myself as having a disability for it enables me to extra support when I need it the most. I am not invincible, nor is my chronic illness steering the ship; it is an equal partnership where each party has a mutual respect and understanding for one another. I do not feel the need to run umpteen marathons or tackle the highest mountains to prove my fighting spirit to the world. 'Courage doesn't always roar. Sometimes it's the little voice that whispers... I'll try again tomorrow.'

28 September 2015

Chronic illness stole my identity!

It is well documented throughout my blog that over the last six years of having Inflammatory Bowel Disease (in my case Ulcerative Colitis) that it has taken a huge toll on almost every aspect of my life; of which I'm sure many can relate to. Over the years my behaviours, emotions, life choices, plans and thought patterns have all been impacted by this lifelong chronic illness that I now face. Admittedly last year was the toughest emotionally for me as it would seem the events that have surpassed since my diagnosis all caught up with me and the emotions hit me like a ton of bricks. My chronic illness has affected so much of my life that it's been challenging to process all of the new changes. Friendships have been stripped away, a change of employment is on the horizon, even simple things have been impacted such as debating whether to give up the independence of being able to drive as fatigue has made itself an annoyance in my life. As documented I spent many a week or month in my pajamas as the worry, anxiety and emotional distress took a toll on my body in the physical sense and I found myself struggling with chronic fatigue. Pajama days became the norm as too did the deafening silence of my mobile phone, somewhere along the line I become forgotten/ left behind whilst I attempted to process and 'deal' with all of the new changes that I now face....I too realized that I had lost my identity along the way.

Somewhere along the line I realized that my chronic illness had stolen my identity. I would spend so much time filling in various forms that it often felt like I was swimming in paperwork; I can't say that I've ever filled in such vast amounts of paperwork than I have done since my diagnosis. It's frustrating feeling like the whole world wants a piece of you while all that you strive for is to be locked away and left in peace and quiet to process your own thoughts. However these days I find myself in a better frame of mind with a brighter outlook on life. Prior I found myself avoiding contacting friends as I felt like we had nothing in common; the issues that I felt were most important to me ..they didn't understand the significance of. This is where social media and building a strong support system comes unto its own, being around others who 'get it' and celebrate your small wins can bring a huge amount of comfort at a time in which you feel like the rest of the world doesn't understand.

One aspect that I've seen mentioned more than I would like to see within the IBD community and something that I have experienced myself  is this sense that our chronic illness sends us back to the drawing board. Often the plans that we set out for ourselves change or we find that we have to abandon some ideas all-together ... however the remarkable thing that I've seen many times over is this incredible ability for those with chronic illnesses to adapt and change to whatever comes their way. Disheartening though it may be to have to change so many of the dreams and goals that we set ourselves, we too have this remarkable way of adapting so that our illnesses don't end up victorious; in some cases chronic illness spurs many of us on to achieve greater things than we would have if we hadn't been forced to stop and look at the world from a different viewpoint. I've lost track of the number of times I've had to return to the drawing board since my diagnosis; It is hard and difficult to deal with so many set backs in life and having to start from scratch again. At the time it all seemed a little overwhelming though now I feel like I am in a much better place to tackle what life has in store for me.

I've found my zest for life once more and it's a nice feeling after such a long time of moaping around feeling sorry for myself. Once more I am finding the enjoyment in things which gives me hope that others in my position will do too. If you do have to wallow....just ensure that it doesn't last as long as mine did ;) I'm making great strides on the journey I'm currently tackling with anxiety which in turn feels like a weight has been lifted. I am no longer feeling like the world is against me, instead I am curious to see what it has to offer me. For now I'm not looking too far ahead but more-so enjoying the moment while it's here. You may have noticed that I've not been great at keeping up with my blog and partly that is due to trying to find a balance, it's a fine line between becoming absorbed in a world of social media and taking the time to enjoy the outside world. For a long time I've felt torn between the two as I am only too aware of what a huge help the online community can be...it too can become a little overwhelming being around a community where someone is always so sick/unwell.

So for now I'm busy rebuilding the friendships that have over the last two years become strained whilst I locked myself away at home trying to regain my focus and direction in life. Still I feel as though I've no immediate direction to head in but for now I am enjoying reconnecting with the outside world. My blog may have been a little quieter than usual but please be assured that I am working hard on building awareness for inflammatory bowel disease! With that said I was recently able to attend my first awareness walk in aid of Crohn's Disease & Ulcerative Colitis horrah! It was really enjoyable to be able to speak face to face with so many individuals who I had spent time talking with over social media. It too is a great feeling to see so many people supporting the same cause with the same end goal in sight; a cure for both Crohn's Disease and Ulcerative Colitis.  I will of course keep you all updated with any further developments as and when they come. It is so important to have faith and hope that the future will be brighter for it's what keeps many of us going.