Being a young adult and merely just out of my teens, dealing with a debilitating, chronic illness is a battle I find myself trying to comprehend everyday. Its incredibly difficult being young as it is yet it is even harder when you have an incurable illness to cope with. Teenagers and young adults go through many growing experiences and stresses without being chronically ill, adding a rare incurable illness on top of that and a volcano might as well have erupted upon an individual's life. Acceptance is vital in this situation yet those who find themselves in the situation know that it is also an incredibly difficult destination to reach.
It is a callous and lonely thing to go through when you don't know of anybody else in a similar situation, no matter what age you may be. It never seems to get easier and the more life goes on for those around me, I struggle to accept that this is now what my life has become. A life that so many of us did not as for. Whilst life is unknown to us all, you still find yourself questioning and picking apart your own circumstances. To be honest I don't really want to have to accept that I am chronically ill and I constantly ponder over why I am not like everyone else my age, yet I know it is beneficial in order to cope.
I often try to put the "different" thought out of my mind but its something that is so obvious with each day that passes how an illness can affect a life and all of its foundations. But the truth is, this is my reality and it wont be changing. I will never be classed as a healthy, active or even an able bodied person. I do have an incurable illness, I am disabled and therefore must use a wheelchair to have a better quality of life (despite my social anxiety fears of seeing people when in my chair) and I want to but most importantly need to try my very best to accept these facts in order to grow as a person. My wheelchair is my lifeline to get out into the world. Life has changed and it will never fully return nor go back to the person I may have thought I was, before diagnosis. After all she always had an illness and disabling pain, she just didn't have a diagnosis.
I know that the key to feeling happier in my situation is to accept this life, but its not something that comes with ease and I really wish there was a chronic pain manual telling myself how to cope with the adversity I and so many other people (especially young adolescents) face everyday. I don't think anybody will ever fully accept an illness. I mentioned in a previous post about everyone wanting to be the best version of themselves, I don't want myself to be ill, housebound and in bed 24/7 therefore I don't see that as a good enough version of the person I envisioned myself to be. I have no way of stopping my body from deteriorating and its very difficult to look back and see the difference of how things can rapidly change.
Those who are chronically ill will know that you are always faced with a new hurdle and sometimes you just need to have a good chat or cry with someone to get your feelings out. In my case I often allow myself to do both, but I also have my blog as an outlet of just being able to say what I am feeling and hoping it may connect with someone else out there (this could possibly be seen as ranting away) when life as a chronically ill young adult feels too much to digest. It's very distressing at times and it often gets the better of many of us who feel so lonely within illnesses grips.
Being chronically ill and in constant pain really is an intense situation, almost like a grieving process. I really stand by that statement after thinking it when I was about 16 and trying to come to terms with what was happening to my life. Being chrinically ill and having my life out on hold has made me feel like Nancy died a long time ago. I am always trying to figure out who the new Nancy is and I hope in time I learn who I am again. I felt a huge loss of my character once I left school, I felt like I had lost everything but my family, I lost lots of friends (barely anyone contacted me once I left school), my school, my education, a routine, some happiness, an outlet, my job, my body drastically changed into a child like state, as well as the little confidence I had. I always feel like I have not had the chance to experience my teenage years and now at 20, I will never be able to replace those years I have missed out on and when I reflect on this it often can reduce me to tears. It shouldn't have been the case for someone of just 13 years old but it was and I know it could well be the case for many people reading this blog, my heart honestly breaks for anyone going through this transition.
In some ways I don't feel any growth as a person, I still feel like the 14 year old who had to leave school forever one Monday afternoon after she nearly collapsed going to her English lesson. I never got to experience the party's, the social events, the trips out, the friendship cliques, moulding as a person, finding my feet, prom, holidays with friends, university and everything in between. I felt like I was trapped in one of those force fields that I couldn't escape desperately watching the world pass me by. Whilst all the people I once knew from school were socialising and talking about what party they were going to go to at the weekend, I was spending every other week in hospital trying to get my head around being diagnosed with a rarely known illness that would never disappear from my life. I was isolated in so many ways and I felt worlds apart from everyone my age. I still struggle with this, also in being able to relate to those my age. I can hold a conversation but I also feel like I have more worries to deal with and that I won't be able to relate tot those who are in good health. Being chronically ill and in pain everyday gives more stress than someone could comprehend who is of similar age to you. When you are young, you desperately want somebody to relate to your situation and I dread to think how many young people who are chronically ill also feel how I have for many years.
In other ways I do see growth in myself. I know that by being ill so young I have dealt with bigger adversity's than most the same age. I know that every individual has their own troubles and challenges in life, everyone is entitled to rate the severity of these problems themselves. On my private social networking accounts I don't mention my illness, disability or problems but I often see others telling the world how they have a cold and haven't been out in two days, that their Friday night plans have been cancelled, or that their clothes order hasn't arrived on time and they think their world has ended and I often think to myself " I wish my own life was that easy". I know that I appreciate the smaller things in life from being ill as well as appreciating the care and love I receive from my family especially my Mum and Dad. Things that money can't buy like being able to be out of bed and cuddling with my dog, seeing my god daughter play in the garden with my family or seeing the sky and clouds outside are things I really appreciate.
Heading into my 20's is even more daunting to me, I don't want history to repeat itself and for me to miss out even more on life, yet when I compare myself from 7 years ago at 13 when I first became pretty much bed ridden to now I have definitely deteriorated and that is scary for me wondering how much worse it could get. Although I now feel those who spend time with me everyday and my two closest friends have a better understanding of my health problems but its still not something I accept lightly. All young people have confidence issues, I see my health problems as a huge dent in my confidence as well as a huge amount of baggage. I know I shouldn't let Ehlers Danlos or any illness define me as a person, considering its the majority proportion of my life its something that does but I feel acceptance towards this will help my confidence majorly.
My health issues have also turned my life plans upside down. Does being ill strip you of your goals and life ambitions? These life ambitions are much easier when health is on your side but they seem virtually impossible to me over the last six or so years. I worry about being alone for the rest of my adult life because of being chronically ill. Never getting to actually meet new people. I know that since I was a child I have always wanted to get married and always wanted to be a mother and this seems like it may never happen the more ill and isolated I become. Its a worry thinking somebody wont want to be with you in a relationship because you are classed as disabled or in a wheelchair especially when you are barely out of your teens. I can't ever see anyone being accepting of my situation and wanting to take on me and my health baggage, but I really hope and pray that isn't the case. I hope in time somebody (more like an angel) will come along and see past my health issues and just see Nancy. My condition isn't something I can hide away from as much as I have tried in the past because I know that is who is who I currently am. It doesn't make me any less of a person despite me sometimes believing it does. Hiding my disabling illness just made me more miserable and distressed. When I used to cover up how ill I was feeling and make an excuse, people often used to tell me I was making it up to just not spend time with them which wasn't the case. The case was I couldn't get out of the bed as a teenager. We deserve happiness just as much as anyone else does but its being able to get there and build the foundations which seem virtually impossible due to how much up time we have when days are often spent in bed.
I have the biggest phobia about being in my wheelchair. Its not so much the sitting in it that bothers me as I know its the best comfort for me, it's seeing someone I know of or that I once knew. I rarely leave the house but when I do I have such bad anxiety and lack of confidence over the situation that I talk myself out of sitting it, despite how much I need it and how much I suffer afterwards. Does that wheelchair really define me as a person? Does it define my personality? Probably no, but it does define the point of life I am at. I constantly think that if I was to see somebody they would run back and tell everyone that I once knew too and I just see that as a weakness or for something to be used against me. I know I don't owe anybody an explanation and that the above probably isn't the case but its making my illness harder to accept, I have always been a worrier of what others think of me.
Fighting the fact I am disabled everyday will just make the process harder to accept. Once I and others finally come to terms with being disabled we will probably find that our life feels more content. Accepting the new reality is the only option that we have to find some happiness in a negative situation. Our lives wont be returning to who we once was and we can only progress forwards as people with an illness who still aim to achieve in life. It is possible, we just have to believe it is and surround ourselves with the correct people . I'm not sure of when I will reach my peak of acceptance, it may come with age it may come with experiences but I know I really cant wait for that day to arrive. It's probably a long road ahead so I also wish you all luck and love on your acceptance journeys too.