Wednesday, 25 November 2015

What chronic illness & disability has taught me....
I know many people dislike the use of the word 'journey', I was also one of those people. It is often mocked, quite cliché, overused, deep and can be seen as slightly spiritual. Another part of me believes it is also important to give yourself credit for the continuous growth within any difficult, overwhelming circumstances that life may potentially throw at you. Chronic illness and disability have personally been a great example of what that word means to me. It is how I find my personal hope in something I didn't expect to occur in my life. However small that hope may seem in the grand scheme of things, it is something that I am constantly learning from.

Life really is so uncertain, sadly it usually takes unpleasant situations in life for us to truly realise how apparent this statement is. How precious health, happiness and movement within our bodies can truly be. Nobody is invincible in how life may change or evolve unexpectedly. You can't predict an illness, a disability or any unexpected event of any sort. You can only try to fathom why you have found yourself in this position. If your answer like mine, seems to be that of a specification that feels out of your hands, such as an incurable illness, then you can only try to make the best of that situation. Which I'm sure is something we all try to do, day in day out.  

Incurable illness and disability are not easy traits to be designated in life. Some people who live in similar circumstances make it look easy. Their strength can make the most content of us question our own existence within our troubles, our limits, our attitudes and our strengths. In reality, no day is easy in the slightest when you live this way. A brave face can go an incredibly long way, it does not always confirm an individuals resilience in bouncing back quickly from personal difficulties. Being chronically ill and because of this, currently disabled from a rare illness, has categorically been the most difficult, unsettling and saddest time of my life. Yet I know realistically, nothing can unnerve me as much as this process has. Nothing could feel as difficult as this process has felt over the last nine years. On the spectrum, it may not seem as difficult to what life has thrown at someone else, yet it doesn't matter because as an individual, it was difficult on a personal level none the less. I can now take that thought with me throughout my life, remembering it in every obstacle and barrier. 

Strangely, I have never wanted nor expect to be cured. I accepted that part of the package a long time ago.  A lot of people who are chronically ill or disabled will want to be cured and there is nothing wrong with that, I hope they can all individually reach that place. My focus has always been hoping that one day, my condition will be more manageable than it is currently. Ideally, I just want my life to reflect upon aspects of normality for someone of my age. I just want to be like every other young woman in this world, with the same responsibilities and commitments, something I currently feel I am missing. I also want to feel genuine happiness and confidence within my disability and illness. I do not want it to feel against me, nor to present all of the things I can't do. I do not want to see it as something I am ashamed of, something I hide often and most importantly, I really do not want these illnesses to rob me of the life I crave. I really hope that in the future, there comes a time and turning point where those who have the same incurable illnesses as myself can manage the complex symptoms and pain that arise within our everyday lives. In order for so many of us to slowly rebuild ourselves to where we want to be in life.

I find with pure ease, I am able to point out all of the challenges and hardships that being chronically ill may bring upon such a lifestyle. It takes a lot more of my energy to acknowledge the positive or beneficial aspects that an illness can in fact, bring in to your life. In the past, I would have argued there was in fact, nothing. So although I have come a long way since then, I still battle and find it incredibly hard to remain positive day to day. It is hard work all in itself and there are always low moments, down days or possibly weeks. It is not easy to force yourself to feel positive when living in constant pain or when you feel crippled with unhappiness. You are imposed with all the reasons to not feel any positivity on these occasions, which we all get. Yet if we cannot change the inevitable, we can only try to work on our attitudes towards how we cope with something that tries to take so much control within our everyday lives. If you are fortunate enough to have health in your everyday life, you only have to reflect on how you feel when you are in bed with the flu once a year. That is the reality of an everyday reflection with a disabling illness. 

From relatively young ages, so many of us have faced health misfortune that many will not experience until the latter stages of life, if at all. Being chronically ill made me feel as if I grew up overnight. Obviously, I still have a lot of growing to do as a person, we all do, however being faced with health challenges is something that forces you to become a grown up quicker than expected. Many young people will typically not experience truly growing up until their late twenties or even early thirties. I felt like I went to sleep thirteen and woke up fifty, although my joints would argue that I was in fact, ninety! It was heartbreaking to be chronically ill, a mere teen and feeling so alien in my health and lifestyle. Illness is so difficult to grasp for young people. Whether that be children, teenagers or young adults. Even adults in their forties struggle to understand what is happening to a physically young and youthful looking person.

I am learning to accept that many will never understand what it is like to be young, chronically ill and disabled whilst looking so healthy. That there will be many who question and doubt over understanding souls who offer to support and help. My diagnosis and conditions are so complex that many would think I was exaggerating or a hypochondriac. As long as I know in myself that I live this lifestyle day in day out, which is currently at a disabling state, I know that nobody came truly question my pain because only I live it. I can only hope that by informing someone who is intrigued of my illness or lifestyle, that it may help them to gain an understanding of what my current day to day life may typically involve. 

My chronic illness has allowed me to gain a perspective and depth upon the meaning of life, at a relatively young age. It has shown me what is important, what is not and what I will try my absolute hardest to make out of my life. It has proved to me even more so how to treat others, how to be more patient, how to be more understanding. Being chronically ill has inspired me to write, to communicate, to share, to trust my instincts, to help others, to use my pain as a fuel, to take my ideas and make something of them. I have hope that it can continue to prove to me so much more and help me to seek my strengths and abilities in life.

I also now have confidence in knowing I have found my people, my community, my support. Although this life may be a predominantly online world, we are lucky that in this day and age social media can have it's perks, when used safely and correctly. I created an outlet of support for myself in the form of blogging when at my most desperate. Which was the best thing I could have done in that moment. Friendships have been formed that I often feel like I would not survive today without. Doubt does not exist and connections are made through the simple action of relation.  

In a reflective way, we put our lives in the hands of time when it comes to illness and disability. Words such as incurable, chronic, long term all become symbolic when emphasising on the concept of time. Where you are unsure of how long your life has the potential to be this way. These specific words mixed with how precious time truly is, can feel more than against you. Everyone must make the most of their situation, good or bad, yet time is such an infinite thing. We want the best out of it whilst knowing that nobody is in fact promised tomorrow.

Although, time may be a healer in many circumstances, it is also the key ingredient when it comes to growing a thicker skin. Especially when presented with chronic illness or disability, where it becomes so quick to be judged, questioned or mocked. Having a thick skin, is something I have always struggled with and hope that it grows with experience and age. Any form of emotion has the ability to hit me like a ton of bricks, yet it is typically the more difficult aspects such as opinions, criticism or thoughts that tend to take the most dramatic effect on my quest for one whilst living with an unknown, chronic illness. I know ultimately, that what I have gone through because of my disabling, chronic illness is helping me to slowly but surely, grow that thick skin. It is funny how something that feels as if it is breaking you can also be having a contrast effect.

Heading into my twenties, as sad as I often feel that I have missed out on so much, I also see reflections and glimmers of hope within the longevity of having a chronic illness. This is where I can focus on growing and flourishing in my own way. Whether that be in having more confidence in using my aids in front of people, letting people know I am now disabled or even having confidence in talking about my conditions and knowing that I can't be doubted because I am the one living this way. I can continue to share my own experiences and hope it may help others, young or old or even lead to new opportunities. Most importantly, I want to start pushing myself a little more out of my comfort zone in order to achieve goals and overcome my fears. Illness and disability seem to have put a stop to confronting them, so I think that is something I need to start doing more in order to feel a bit more human.

Acceptance is a continuous thing in chronic, incurable illness. Some days are worse than others, no day is pain free yet you end up becoming your own advocate when there is only so much that medical professionals can do to help you. I am continuously learning how to handle appointments, meeting new doctors, ways in which to express my concerns and ways in which I can try to help myself and parts of my life. You are constantly adapting and most importantly, learning when you live with a condition that has the potential to deteriorate day to day.  If I lived with pain for the rest of my life, I wouldn't mind as long as I felt truly happy and content in life. I still have many worries and concerns within being chronically ill, I would be lying if I said it doesn't often make me feel embarrassed or much less of a person. I have major fear when it comes to love, rejection, support and feeling like a burden to others. Nevertheless, I hope I can take my past experiences and use them to get through each little curve ball thrown my way.

Yes opinions, doubts, questioning and lack of support can make me feel isolated, afraid, alone and unsettled. They probably always will have the ability to ignite the original fear that I often feel at my most vulnerable stages, with a disabling chronic illness. Opinions have always and will always affect me, yet really when you live with a chronic condition, we can't allow opinions to hurt us more than what our pain and lifestyle already attempts to do.

Although accepting that this has the potential to be a 'life long problem' is a pretty scary thought, with a welcoming attitude of acknowledging progression in many forms other than in improved health, it might start to be seen as small victories within your lifestyle. To know it was possible to get through things such as a bad day, an appointment, high pain levels, when it did not seem possible are things I will personally try to look towards as triumphs. My illness, my disrupted teen years and all I feel has had the potential to hurt me during this process, have also ignited many future plans in my mind that I hope to create one day in the near future.

So yes, a chronic, disabling illness has taken so much from me up until this point. Nothing can replace the sadness that it has implemented on my current state of mind, my current lifestyle or how I feel about my future. I feel weak in many ways, yet I also strangely can feel strong and it is that strength that I truly must depend on and make sustainable, throughout this journey. I have already learnt, adapted and accustomed to so much within my time of having a disabling illness. I know there is still so much more to come, yet I also hope for more uplifting and happier celebrations along the way. I hope that I will recognise that I can survive the trials and tribulations presented to me in this lifestyle, as I believe that all of you can and will too.


  1. Hey Nancy,
    You are amazing. I found your blog just a few days ago. What a discovery! :)
    I was searching chronic teenage illness and then visited your blog.
    It is a great feeling knowing a person who is suffering so badly every second of the day.
    I can completely empathize with you as Both me and my Girlfriend are going through the same thing. We are both 20 and suffering from chronic pain. We don't have ehlers danlos. But despite that, we have a lot in common. Pain 24x7 is the worst thing that can happen to anybody.
    We are both very lucky to have found true love and it is the greatest gift for a person with such a debilitating condition.

    Your every article is amazingly written. Keep up the good work.

    Wishes and Laughter,

    1. Hi Ryan,

      Thank you so much for taking the time to not only read my post, but to also write such a lovely comment.
      I am very sorry to hear that both yourself and your girlfriend are chronic pain sufferers. I can't imagine how difficult that must be in a relationship for the two of you but I am so glad that your love is a gift within your circumstances. I can only hope to be as lucky in the near future.
      Keep supporting each other and please do not hesitate to get in touch if you both need to chat to someone else in similar pain circumstances.
      Best wishes,
      Nancy :)

  2. Hello!
    I'm also suffering too.
    I've just got home from being hospitalized and I'm really down.
    I might have to go back eventually, and my parents sometimes forget I'm going to be this ill for a lifetime. I have trouble eating/absorbing nutrients which so left me so unbarebyly weak and ill. I'm very scared one day my body might really give out one day at this rate.
    . ~ .

    1. Hi there,
      Thank you for taking the time to leave a comment. I am very sorry to hear you have recently been hospitalised. I can't imagine how much worry you have going on in your life at the moment, but try not to overthink the future. I know personally, I find that really hard but none of us know what the future holds, even in terms of when we may need extra medical attention.
      Whilst you may always have an illness, there may come a time where it may be more manageable, you might have better medication, you may have more support, you may become less down and find some happiness in different aspects of life. There is always something to work towards and the only option we are left with is to look for a positive when life feels very negative because we are consumed with pain.
      I know I have to rationalise every situation whilst also trying to see a positive. It is hard work but you always have someone to turn to and people who understand what you are going through.
      Wishing you well,
      Nancy :)

  3. thank you for this post. a friend of mine sent it to me. I am 26 with a mast cell disease and hypermobility (still in the process of diagnosis). I really appreciate you sharing a piece of your life with the world and bringing awareness to rare diseases. I'd love to connect on Facebook. my name is Kassandra Boerrigter :)