Saturday, 9 August 2014

A chronic illness affects a whole family....

This is something that I have been very aware of since I became chronically ill at a young age. Yet instead of looking at the bigger picture, I always seemed to focus on the negative of a family being affected by an illness, rather than the positive. Yes, if you are the person who is chronically ill in your family, when you analyse the situation there are probably more negatives that swim to the surface of your thoughts in ratio to positives. Sometimes the positives can make you realise just how lucky you are. We are not lucky to live with chronic pain but we are lucky within the support we have around us in some circumstances.

When I was about fifteen, I assumed that just because I was the individual feeling the physical pain and side effects of my illness, that I was the only person going through it. I felt like there was no way it could be affecting anyone around me on the scale it had impacted me. I felt as if nobody understood the journey I was going through. This was such a selfish way of thinking but I was incredibly young, confused and frightened within the circumstances. You build your walls up to protect yourself and feel like you can cope with illness at a young age. The reality was that my Mum was attending every single weekly appointment in London with me and my Dad would be the one to transport us to the hospital. We were all in it together, yet I felt like I was in this lonely bubble and carrying the weight of the world on my shoulders. 

An illness and drastic lifestyle change affects everybody in the house. Everyone is worried, anxious, concerned and everybody has fear. It was very wrong of me to assume that only I was going through this transition and I should have had more compassion. I never thought how devastated my Mum and Dad might possibly be feeling. To have to watch their child coping in pain every single day, knowing they can not do anything to ease or control the pain. I forgot to step back and see it from that perspective because I am not a parent myself. So I imagine that helpless is the word many parents may feel when watching their child live and attempt to cope with an illness and disability. Knowing that there is not much that they can do to help yet wishing they could provide their child, the world and more. To protect them from pain. 

I felt like a burden to my Mum and Dad for a very long time. I don't mind telling you all that as I know if you are of similar age or have spent your entire childhood and teenage years as someone who has a chronic illness, you would have felt it at some point during your illness too. I felt so guilty that their only daughter had an incurable illness and that there was nothing in their power they could do to take my pain away. I constantly felt like I was to blame for them not being able to enjoy life as much as other couples their age and I felt terrible coming to terms with the fact they had to care for me for the prolonged future. Someone has to constantly be around to care for me and I know it's not the life I wanted them to ever have. It's not the life I wanted for myself either so this is where I try to realise I am not an illness, I just have an illness. I know they would never blame me for my illnesses or the fact that we do not manage to do much as a family. My parents spend the majority of their free time keeping an eye on me. Mum always reminds me that even when your child is an adult, you will regardless want to look after them if they need you too.

When I was diagnosed, my parents were elated because they thought that I could finally be helped or possibly cured. To get back to being just like everyone else my age. Not long after that we found out that my condition was incurable and since then year by year, we get used to just how much I am deteriorating. Despite finding that a hard pill to swallow, we take each day as it comes. We have become pros on the ins an outs of my health issues, understand how the day to day pain works, how drastically symptoms change yet emotionally, it never gets easier. When I see my Mum devastated over  how helpless she feels to watch me in pain, it breaks my heart. I never wanted to put either of my parents in this situation and I wish I could do something to change it and to make them happy and care free again. I often worry about the amount of stress I may be putting on my family and I'm sure many feel that way also.

I know that it kills my parents to see me so poorly, yet I do know how much they love me and that they would walk on hot coals for me. I know that they would go to the end of the earth if they could to make me better (mum researches EDS, POTS, MCAD and all of my other diagnostic criterias, every single day of the week to find ways to ease my pain, medications, ways of coping, specialists and anything she can think of). I don't know how I could have ever come this far in my illness without their support. I am extremely lucky to be able to call them my parents and I am so proud of the way they have conducted themselves during this time. They are incredibly selfless. I am so grateful and thankful to have their support and love as it could be so much worse without this.

An illness is a very testing time in the family dynamics. You want to take all of your anger, stress and frustrations of the illness out on those closest to you. Sometimes I didn't even want to bundle the extra stress on them both and tend to become quite silent (even though I know my family are open to speaking of what we are feeling). I felt like I was the cause of my family's happiness draining away day by day and consuming their lives with negative. The illness is so complex too that it took a long time for every individual to understand just how much I was trying to deal with. It took a long time for Dad especially to understand why I wasn't going to get 'better' or be 'cured'.

Another relationship my health really affected was the one with my brother. At times it felt like I was taking some of mum and dad's attention away from him and that he felt shut out because of this. I assumed he had some resentment towards me because they seemed so focused on getting to the bottom of my problems for a long time. We did not have a great relationship for a long time during the early years of diagnosis. He didn't show much interest in wanting to know what was wrong with me, how my hospital stays were going or anything in between. He tried to avoid any conversations to do with my illnesses and the reality of what was happening to our family. 

You don't always like your siblings but you love them unconditionally. I will say that as time has gone on, he has started to become more understanding towards my condition. Since he has seen first hand how it effects me daily and that it really doesn't disappear for a day so I can lead a normal life, its constantly there. I've never felt the need to ask him why he acted so weird towards me during this time as I know everyone reacts differently to situations, some people show more emotion at testing times. Our relationship has become better overtime, it took a long time to build the foundations but I can only hope that if anyone else is suffering from some distance between a sibling that they can mend their relationship in time.

Even now I still slip back into the mindset of guilt and blaming myself for changing my family's dynamics. Sometimes it happens just when I analyse the whole situation of being chronically ill. Other times its when I over hear my dad on the phone explaining why we can't commit to coming to a family gathering because we don't know how bad my pain levels will be that day. I see my mum work so hard to take holiday off work just to spend her time indoors because she doesn't want to leave me to go out for the day. There have been occasions where we have committed to things and had to cancel last minute because of drastic pain turns. It makes going places incredibly difficult and I'm sure even if they don't express this, it must be difficult at times feeling like their lives are on hold too. These moments of doubt will always exist but I truly think unconditional love from a family member helps to eliminate a large quantity of your fears and concerns. 

Illness definitely brings you closer together as a family. It might not be obvious now, but it will in the future. Testing times show the strength of a family. You go on a journey together and are each others wings at times. My family can now speak of my illness more openly, we cry over it at times and sometimes we find humour in the situation and make little jokes over my pain. Sometimes its easier to laugh than to cry. For the majority of the week I have really terrible days with pain. All of my symptoms flare up, as well as multiple dislocations, breathing problems, not being able to leave my bed until 5 pm and I become so frustrated. I often feel like I don't really have much else to give in life. Then I remember how lucky I am to have a supportive family who will do their up most to help me get through the day and just be there as a shoulder to cry on. To run around after me when I can not stand up, to sit with me in my room when I can't leave my bed. Without this, being chronically ill would be much more difficult and I really sympathise with anyone who doesn't have a support network.  

I just want to remind all of you who may be feeling guilty towards the issues you face being bundled on to your family during your chronic illness or disability journeys, a parents love is unconditional. They won't blame you for what has happened, you will always be their child and they will always want to look after you and be there for you. A parent is somebody who becomes incredibly selfless, even more so when they are dealt with such adversity.

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