Monday, 27 July 2015

Defined by your disability? When chronic illness feels like it steals your identity....

image: Tumblr via Google Images

Some say what we go through in life has the ability to change our existence entirely. Sometimes, these momentous occasions are triumphant and positive. Other times, they are some of the toughest experiences a person has to get through and face head on. These moments can be short lived or linger in our lives for longer than expected. Ultimately, it is always up to an individual to decide in which category they have fallen into during any selective time period in their life. Sometimes little aspects can really distress us and other times it's the bigger aspects that truly rattle us. We all have a subconscious scale of what we find challenging as individuals in comparison to each other. One thing we all have in common in these moments, is that we are not told how to prepare mentally for these kind of arising challenges. 

These occasions have the ability to change you for the better but they also have the ability to shake things up in your life, leave you in distress, implement future worries and cause you to face a new reality. They can damage your confidence, change your personality and hinder your growth. This might not be obvious to everyone initially or even at all. I know from personal experience, that deep down, after a long time of living a certain way, a drastic change in life can sometimes make you focus on the negatives. It can rob you of your character and leave you feeling empty inside. However, despite these challenges, we always learn along the way. 

Up until quite recently, I would always state that I felt like I had lost my identity at 14 years old. The time where in my eyes, my life went on pause. My health was slowly deteriorating and I had no control over this aspect of my life. Health has always been wealth to me. Although I am very aware that with each passing day, we grow a day older and hopefully a day wiser, there are a majority of days in the week where I still can't find the correct tools and avenues to rediscover my identity. The thing that should be separate to my illness. I sometimes make the mistake of defining myself with my illness, it shouldn't be the case, but sometimes it hard to forget that we are still human underneath the exterior of a disability. I know that if someone who had an illness or disability expressed that comment to me, I would quickly point out all that I see in that person. Their personality probably being the focus, I'm sure illness wouldn't be the first thing that would even come to my mind. 

Living with chronic illness has been something I have faced for many years now. In all honesty, I often feel like the last time I truly 'lived' was before my teens. The fact I am only 21 is the bittersweet issue within that prospect. Disability and illness can take away the joy of life for some of us. We then find it hard to get back on our feet and heading in a direction we are happy with. The adversity of disability was something I never expected. I have always been a firm believer in accepting that what we go through in life, shapes us into who we become. I accept that process, but it doesn't mean I am always happy and welcoming of it. Ultimately, I am always optimistic that what happens is for hopefully a reason. 

How do we separate ourselves from our disabilities when they seem to have so much physical power and control? Your previous lifestyle is slowly but surely replaced with a pace in co operation to your disability. Your personality shifts with the adversity you face from your new found reality and any hobbies, interests or personal traits seem to fall to on the back burner. You feel like with each passing day you slowly lose yourself to your disability. It has the ability to make you feel like it is all that makes you in life and sadly, all that your world has become revolved around. I am forgiving in knowing this isn't completely through my own fault, illness has just made me lose my way and forget to enjoy life. I don't find that admission shameful, I know its more than likely at least crossed one other persons mind that is potentially reading this. I just think its quite heartbreaking that an illness can make somebody feel this way. No matter their age, occupation or lifestyle. 

Chronic illness for an incredibly long time has made me feel like all I had to offer was the pain and sadness it brought to me on a daily basis. The chaos of loss, confusion, isolation and sadness replaced the girl who was once felt like she had a personality with a slight sparkle in her eye. Illness has consumed me for over a decade now and seems to be the whole reason I am who I am. There are times I question who I have become, why my life is this way, why do I have a disability or why can't I live a life I am content enough with. Nobody wants to be on this earth to suffer, nobody wants to feel like they watch the world behind a window pane. We all want the best quality and quantity of life for ourselves and our loved ones.

At some point during our journey with chronic illness, the majority of us would have felt the overwhelming, smothering feeling from the realisation that we will potentially always live a life like this. A life of possible longevity, but with chronic pain, illness or a long term disability. It is from that point forward that you just feel completely lost in yourself and everything you once knew or thought you knew. It all seems so far behind you. It's a reality check because life suddenly really does drastically change. Before you know it, everything else does too. Illness drastically changes you as a person, in both positive and negative ways. Illness and your new found reality implement fear, even if you are trying to make the best out of a bad situation. 

It is common in chronic illness to feel the loss of yourself, your life, your normality and your independence. It's a complex lifestyle to adjust to. The biggest personal issue for me has been losing myself, my path, my happiness. It's not something that gets easier with time, the longer I live with illness, sometimes it's this concept of 'time' that causes more pain and hurt in my heart. I find it hard to recall the things I enjoy or have the potential to enjoy. I find it hard to think of aspects that I like about myself or that people like about me. You feel like you died a long time ago and some rotten disability replaced you in the night. It feels like health issues have now replaced or consumed Nancy. When it's yourself it's always so much more difficult to overlook the positives and indulge your thoughts into the negatives. No matter how many times a person may try to elevate your abilities to look past the thing that is holding you back. Let's be honest, it's a fact that we are always within our own company. We are often too hard and critical on ourselves.

I always remember in the One Direction 'This Is Us' film, Harry Styles stated that he hated the word celebrity. He felt it was superficial and made him less of a person, a stigma almost. I felt comparison in this comment to how I feel about being disabled and chronically ill. Illness has taken over me to the point where it has almost become my identity. The first thing that comes to mind when I think of myself is my disability. The first thing that others become accustomed to making conversation about is my disability. Usually because work or social related activities are currently not present. Sadly, it currently feels like my defining moment to date and I'm not always sure how to feel about it.  We all have the ability to be defined or looked upon as something, however I always wanted something more positive. Not a word I relate to mostly negative connotations because of what it has brought into my world. I am hopeful in the future, I can find something much more positive to correspond with defining myself, my life and my achievements.

Sometimes living life with a chronic illness or disability doesn't feel like it's enough. 'There has got to be more to life than my reality', is something I am guilty of thinking of occasionally. Lack of excitement, lack of joy mixed with goals we are desperate to seek within chronic illness amplify this feeling. Our days can feel empty and less sufficient than the average.  I would much rather a job be the most consistent thing in my life but I'm working with it. There are going to be so many days where you highly doubt your existence when it comes to illness, you can often feel like you waste your days just procrastinating in bed. Your purpose feels hard to search for. I feel so boring because I am housebound, if someone was to ask my what I like to do for fun, my mind usually goes blank. Fun? Does that word even exist in my dictionary. Not since I have become housebound and disabled, that's for sure.

You find yourself searching for the answers of what once filled you with happiness or even an escape from your everyday troubles. At times, these old things are difficult to attain in your present because they are no longer disabled or chronic illness friendly. Your physical limits have the final say on a lot of your challenges. Then you reach a dead end in hope. I know that there are multiple enjoyments in this world for people to continuously try and take part in, but when you live in pain, you lack the ability to want to try. Not because you are lazy, because you are drained, in pain and suffering.

I do however believe, there is always a positive, in any situation that you deem bad. Even if it takes you a good while to convince yourself of it. Although sometimes you may be drained by the process of what you are going through, these arising moments of our existence can also prove that you do have the ability to get through whatever life may throw your way.  It's not always easy, it's not always fair, it doesn't always make any sense but it is the present and it's all we have to work with. 

It becomes a case of remembering the aspects of life that are personal to you and not dictated by your pain, your disability, your health or your illness. Sometimes, I do find this aspect really difficult. What makes you, you? Try to forget the more obvious aspects that your illness controls. What do you enjoy? What makes you laugh? What is your style? What is your guilty pleasure? What is your movie genre of choice? Who's you favourite artist? What's you biggest dream? Who is your role model? What would you do for fun? There is always something you feel passionate about. There is always a quirk within your personality that others and yourself will eventually be able to see.

It's not always a simple task trying to recall who you once were before you became chronically ill. Illness has the ability to flip your world upside down when least expect it. It doesn't discriminate, it just happens. Chronic illness will impact your life for better and for worse. Things such as your personality, patience and your outlook change with each passing day. It's not a bad thing, it usually makes people have a greater understanding of what's important in life. 

Life always carries on, sometimes you are so caught up in your disability that many aspects of your life and personality dwindle away. It's not all negative. In the attributes I feel I have lost within myself, I have also gained in other ways. I am grateful for the positive personality aspects that illness has brought into my life. However, it's the darker and lower aspects that are more apparent and intense when you live with chronic illness. I can't stand and at times, can't cope with the isolation, the social anxiety, the fear of coping, the depression or the knock in confidence it has implemented into my daily life. 

On reflection, sometimes I wake up and instantly feel disabled. It's how I then personally define this whole day, which usually turns out rubbish because I let my disability win. In reality, I should accept this day for what it is and cope with the present. One of my strong points is that mentally, I don't often feel disabled. I feel like this is both a positive and a negative attribute of my thoughts. The negative being that I am not fully accepting my situation, lifestyle and physical weakness. The positive being that, as long as I continue to think this way, I won't be allow myself to wallow in self pity. I will still be able to push myself and feel like my goals are still half attainable.

I am still the daughter that wants to make my parents proud, I am still the friend who will always be there when I am needed, I am still Nancy, I just have to cope with a disability and I will hopefully be able to do just that. I will find things I enjoy again, I will find my way in living life again and I will be try to be kind to myself and this process of acceptance. We can make terrible circumstances beautiful in their own way. It's not always welcomed or suitable, but you can only work with what you are given. Some of us were given a disability, we just can't allow it to continue to define us. You are the only person who can discover the attributes that make you unique, despite your disability.

I have only just started to realise and accept that I am so much more than the symptoms and attributes of my disability. I need to remind myself of this and everyone else that too, even on days where pain convinces you that you are less because of the adversity you may face. I've tried to turn the aspects of my illness that I can into a positive, I like that fact that I can share something in my own corner of the Internet and hope that someone out there takes some comfort from my words. I hope that my fears within my own illness can make others more accepting and willing to work through theirs. Illness has taught me so much and has been the most testing time in my life. Like I said, I always state that I just feel like an illness, I think what I mean to say is I've always lived with illness, other than family it has been the most consistent thing in my life.

There is so much that we dismiss when we live in a life with chronic illness that we forget the simple things that make us human. We are quick to forget the positives that others are quick to see, even if we can't. In rational hindsight, we are so much more than out disabilities. They are a huge part of our lives, but they were not born and presented to the world, we were. Although it often may make me feel this way, disability is not and will not be the most important part of me. I would be quick to point that out to someone else in similar circumstances. 

I challenge you to ask or text your loved ones or friends. What do they think your best qualities and attributes are as a person? How would they describe you? I would bet that 99% of the responses wouldn't even mention your disability. If the people that we love can easily and positively overlook our disabilities, why can't we be as kind to ourselves?


  1. "disability is not and will not be the most important part of me" - it is not indeed, what is important about you is how you handle it, you ask how would a person describe you? from someone who barely knows you but from what I gather you are kind , caring , determined , strong and brave.

    Take care Nancy

  2. Nancy,
    You are an amazing person. Can I just tell you how much I am in love with this post and how in awe I am of you. I am a fellow fighter of chronic illness. Reading this made me realize how much I beat myself up over the stupidest things. Around this time last year, and unfortunate event took place at my work and I got severely hurt which has led me to be not able to work. I work with individuals with intellectual disabilities and it was my world. I have really been missing my job and feeling like I'm worth nothing despite what my husband says. I'm a newlywed who can't even do her own hair, unhook her own bra, etc. my husband does these things for me and I feel like I'm not my own person anymore or the girl I used to be, either. Just know that you're not alone in this fight and I will always be in your corner. I honestly think that you have found your calling whether you realize it or not. You are an excellent writer and I believe that you should start being the person on the platform standing up for all of us with chronic illness. You're amazing and don't ever forget that!

    Thank you so much for this post! I needed it!
    Brittany (fellow blogger & fighter of chronic illness)

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