I have a life changing illness. How am I supposed to cope?
Yesterday, I read this article about having cancer in your 20's and although there are some marked differences, it also in part rang true to being diagnosed and living with a life altering long term condition. For me, being diagnosed with autonomic dysfunction at the age of 20 was initially a relief - I finally had an answer, but equally? It is a diagnosis that will stick with me forever and that gives me troublesome symptoms every day.
At the beginning of my 20's my life was put on hold. I lost my degree, I struggled to maintain friendships and a social life and became deeply depressed about how this illness was stealing my life before I'd even truly got started. I contemplated moving back home to live with my Mum but desperately didn't want to lose my independence. However, in not losing my independence I was thrown into the tricky world of benefits and financial hardship. I had no savings to rely on, I was sick enough not to work full time, not sick enough to qualify for any benefits in relation to that. Being surrounded by people who shared my faith was encouraging - yet equally reminded me that I was dropping behind all the time my life was on hold. Friends were getting into relationships, getting engaged, getting married and having sproglets and me? I was just trying to stay upright through the day.
I am also constantly plagued by the feeling that I am a burden to those around me. Fortunately, for the most part I am stable and my symptoms are manageable, but there are times when I'm not so well and I rely heavily on my friends for emotional and occasionally physical support (in terms of bringing me groceries or the like!). I feel so guilty to be unwell, like it's my fault that somehow I should just get better and no longer have a wonky autonomic nervous system. If only it was that simple.
So how am I supposed to cope?
In truth, to begin with, I really didn't cope. At best, I survived. I muddled through day-to-day wishing it would all just go away and I could be a normal young woman again. But gradually as time went on I learned that to get my life back I needed to accept my diagnosis and take control rather than letting it control me.
Accepting you have a life altering condition that will possibly (probably) never get better is hard. To know that I will always be prone to fainting, to palpitations, to infection, to fatigue and exhaustion is hard and initially I rebelled against it. I wasn't compliant with medication, I didn't drink enough water or eat the right foods, I didn't rest when I needed to or listen to my symptoms. I felt it was unfair that I should have to change the way I lived my life to cater for having autonomic dysfunction. However, once I eventually accepted that I was ill and started truly complying with treatment and looking after myself? I had the control back. If I took my medication, ate well, drank enough and rested when I was tired I was in far better control of my symptoms that when I tried to just ignore them.
After acceptance came the part where I began to rebuild my life. I started to socialise again with people who were understanding of my slightly wonky body. I got stuck back in at church and found huge comfort in my faith. I applied for realistic jobs whilst I regained my strength and eventually returned to working full time. There are stills days, weeks and sometimes even months where I'm too unwell to live the life I want to, no amount of looking after myself and complying with treatment will make this go away but having rebuilt my life and accepted my diagnosis coping has become a lot easier.
Living with a long term condition and particularly one that for the most part is invisible is by no means easy. I am very aware that I am very fortunate to have good symptom control but sometimes the persistence of living with a long term condition wears me down.
At the beginning of my 20's my life was put on hold. I lost my degree, I struggled to maintain friendships and a social life and became deeply depressed about how this illness was stealing my life before I'd even truly got started. I contemplated moving back home to live with my Mum but desperately didn't want to lose my independence. However, in not losing my independence I was thrown into the tricky world of benefits and financial hardship. I had no savings to rely on, I was sick enough not to work full time, not sick enough to qualify for any benefits in relation to that. Being surrounded by people who shared my faith was encouraging - yet equally reminded me that I was dropping behind all the time my life was on hold. Friends were getting into relationships, getting engaged, getting married and having sproglets and me? I was just trying to stay upright through the day.
I am also constantly plagued by the feeling that I am a burden to those around me. Fortunately, for the most part I am stable and my symptoms are manageable, but there are times when I'm not so well and I rely heavily on my friends for emotional and occasionally physical support (in terms of bringing me groceries or the like!). I feel so guilty to be unwell, like it's my fault that somehow I should just get better and no longer have a wonky autonomic nervous system. If only it was that simple.
So how am I supposed to cope?
In truth, to begin with, I really didn't cope. At best, I survived. I muddled through day-to-day wishing it would all just go away and I could be a normal young woman again. But gradually as time went on I learned that to get my life back I needed to accept my diagnosis and take control rather than letting it control me.
Accepting you have a life altering condition that will possibly (probably) never get better is hard. To know that I will always be prone to fainting, to palpitations, to infection, to fatigue and exhaustion is hard and initially I rebelled against it. I wasn't compliant with medication, I didn't drink enough water or eat the right foods, I didn't rest when I needed to or listen to my symptoms. I felt it was unfair that I should have to change the way I lived my life to cater for having autonomic dysfunction. However, once I eventually accepted that I was ill and started truly complying with treatment and looking after myself? I had the control back. If I took my medication, ate well, drank enough and rested when I was tired I was in far better control of my symptoms that when I tried to just ignore them.
After acceptance came the part where I began to rebuild my life. I started to socialise again with people who were understanding of my slightly wonky body. I got stuck back in at church and found huge comfort in my faith. I applied for realistic jobs whilst I regained my strength and eventually returned to working full time. There are stills days, weeks and sometimes even months where I'm too unwell to live the life I want to, no amount of looking after myself and complying with treatment will make this go away but having rebuilt my life and accepted my diagnosis coping has become a lot easier.
Living with a long term condition and particularly one that for the most part is invisible is by no means easy. I am very aware that I am very fortunate to have good symptom control but sometimes the persistence of living with a long term condition wears me down.
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