Anyone who’s life has been impacting by a chronic illness knows, as difficult as it may be to admit, that it irrevocably changes you. When I first started to map out this post in my head I was honestly a little too negative in my view of how it has changed me. But since, yet again, I have been stuck at home with another flare up it’s given me time to think of a more balance approach to this question. While the struggle is real and it certainly isn’t a wonderful world of rainbows and butterflies, this experience has taught me so much over the years and built qualities in me I may not have possessed previously.
I may have only been 18 years old when this all started but it very quickly taught me to have strength and resilience and let me tell you that was a bloody tough lesson to learn. In the beginning I was terrified to move, walk, bear weight on my leg and even put on shoes or socks but thankfully my family pushed and sometimes bribed me to get up and walk on my leg. I have to admit I actually walked for jellybeans, oh god the shame. But of course that bribery worked a treat because it showed me that I wasn’t going to do anymore harm to my leg if I used it and that gave me the strength to carry on regardless of how painful it got. I did not want to loose my leg and the fear of that and the resilience my family instilled in me helped me to battle on and no mater how much walking hurts to this day I refuse to give up, even if the wheelchair means I walk a little less.
With that strength and resilience came a perseverance that I had never known and has lived with me ever since. I went to University when everyone was terrified for me to do so, I’ve backpacked round Europe and I’ve have had some fantastic career experiences when many people questioned why I even worked at all given my disability. Who would have thought the girl on crutches could interview rock stars and politicians, be part of transforming a business and travel in Europe to help other companies do the same. I’ve travelled to some amazing and far flung places in Asia. Even though some of those journeys terrified me and I often paid the price with increased pain I don’t regret them for a second. These experiences change you for the better and widen your world view and like my illness have made me who I am today.
That strength and resilience did sometimes come at a price. In the beginning my applications for mobility allowances and disability benefits were declined so I decided I could do this all on my own. And while that was admirable it led to my downfall at times. That determination helped me struggle through university (thanks mum and dad for the taxi subsidies), I was the queen of the free bus service in Manchester but it got to a point where I was house bound because I couldn’t afford Taxis everywhere. Thankfully my GP recognised my low mood and the root cause and pushed me to apply again with his back up this time providing evidence. I received the benefits I had no doubt been entitled to for years and all of a sudden I had this freedom I had never had before. An adapted car gave me independence I hadn’t realised how much I had craved and the Disability Living Allowance allowed me to get the help round the house I had so desperately needed and never wanted to admit. This experience taught me another valuable lesson, trite as it may sound, pride comes before a fall and asking for help is not a sign of weakness but a sign of strength. Having a chronic illness that is a lesson that is better to learn sooner rather than later and it is the one that will be the toughest to stick with. The balance between resilience and accepting help is a delicate one, pride again can often get in the way.
Those early years of self reliance had
some other adverse consequences. I closed myself off to other people with long term illnesses and disabilities I didn’t feel like I was one of them, I wasn’t disabled, right? However I have opened myself up more in recent years since I have finally accepted my diagnosis and everything that comes with it, only took me about 14 years, what can I say I am stubborn. In more recent years as I have opened myself up I have learned more about other peoples struggles with chronic illness and disability and seen the way wider society isn’t as understanding, accommodating and inclusive as I thought it was, even if that was of other people and not myself. It has made me see that I am more tolerant and understanding of others than I realised, I always thought most people saw things the same as me, how incredibly naive. While social media and blogging can polarise opinion I feel it has made me even more compassionate in my world views and much more understanding of other peoples struggles, issues and lifestyle choices. I have been judged, excluded and misunderstood over the years myself and it makes you feel like less of a person and I would never want to be the reason someone else feels inferior or less than their best self. I had my periods when in the early years of my condition when I was bitter about what I had lost, jealous of what others could do, that I could not, and while I am not perfect I feel like my recent mental health struggles have changed me for the better. I’m trying to have a new approach to how I live my life and focus on the positive.
As I mentioned earlier I am in the grips of a pretty nasty flare up again and have a lot of tough choices ahead of me about my career and my rather limited healthcare options and I have decided not to let this get me down. I have a husband who loves and supports me, the best little doggo in the world (in my humble opinion) who keeps me constantly entertained and means I’m never alone. I have an incredible family and group of friends who are here to help guide me through this next chapter and as such my possibilities are endless.
While I am far from perfect in my consistency of this new approach to life I am trying to live a more positive life, focus less on what I can’t do and don’t have and more on what I do. The biggest way my condition has changed me is to be nicer to me, I’m not perfect but I get the feeling exciting times lie ahead for me. For way too long I allowed my condition to change me for the worst whether that is stolen confidence, being scared of failure, less trusting of people and less ambitious. But, that didn’t get me anywhere good so I chose happy, I chose optimism and I chose to live a life where anything is possible. Now I just need to pluck up the courage to go after it, the struggle is real but I’ll get there.