This is something I have been very aware of since I became ill. Instead of looking at the bigger picture I always took the negative from a family being affected by an illness rather than a positive. Yes, if you are a chronically ill person when you analyse the situation there are probably more negatives to there being a chronically ill person in the family to positives. But sometimes the positives can just make you realise how lucky you are.
When I was about 15-16 I assumed just because I was 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 that nobody understood the journey I was going through, even though my Mum was attending every single weekly appointment with me. An illness and drastic lifestyle change affects everybody in the house. It was very wrong of me to assume that it was just me going through this. I never thought to think how devastated my Mum and Dad might be feeling, they have to watch their child coping in pain everyday and they can't do anything to ease or control the pain. So I imagine that helpless is the word many parents may be feeling.
I felt like a burden to my Mum and Dad for a very long time and I don't mind telling you all that as I know if you are of similar age or a teen that has a chronic illness you will have felt it at some point during your illness too. I felt so guilty that their only daughter was ill 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. One of them has to constantly be around to care for me and I know it's not the life I wanted them to ever have. I know they would never blame me for my illness or the fact that we don't manage to do much as a family and that they spend the majority of their free time off work indoors. My Mum always reminds me that even when your child is an adult, they will never not be your baby.
When I was diagnosed my parents were so happy because they thought that I could be helped and get back to being just like everyone else my age. Not long after we obviously found out my condition was incurable and since then year by year we get used to just how much I am deteriorating. We have become pros on the ins an outs of my health issues, understand how the day to day pain works, but emotionally it never gets easier. When I see my Mum cry with how helpless she feels it breaks my heart. I never wanted to put her in this situation and I wish I could do something to change it and to make her happy again. I worry about the amount of stress I may be putting on my family.
I know that it kills my Mum and Dad to see me so poorly but 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 (my mum researches EDS and POTS every single day for 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 my Dad to understand why I wasn't going to get 'better'.
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. I never had a great relationship with him for a long time during the early years of diagnosis. He is only four years older and 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 EDS and the reality of what was happening. When he did have an opinion on the situation, his words usually hurt me and reduced me to tears. I didn't understand how I could be living with someone who just didn't have any compassion towards the situation.
He is completely different to me, I say that we are chalk and cheese, we have polar opposite opinions and emotions. For a long time, we barely acknowledged each other in the house, considering we only have each other as siblings this probably wasn't the best thing to do. You don't always like your siblings but you love them unconditionally. I will say that as time has gone on, he has become more understanding (I hope) 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. He knows that I rely on a wheelchair if I venture out and that I am in the house 24/7. 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 too.
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.
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.
When I was diagnosed my parents were so happy because they thought that I could be helped and get back to being just like everyone else my age. Not long after we obviously found out my condition was incurable and since then year by year we get used to just how much I am deteriorating. We have become pros on the ins an outs of my health issues, understand how the day to day pain works, but emotionally it never gets easier. When I see my Mum cry with how helpless she feels it breaks my heart. I never wanted to put her in this situation and I wish I could do something to change it and to make her happy again. I worry about the amount of stress I may be putting on my family.
I know that it kills my Mum and Dad to see me so poorly but 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 (my mum researches EDS and POTS every single day for 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 my Dad to understand why I wasn't going to get 'better'.
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. I never had a great relationship with him for a long time during the early years of diagnosis. He is only four years older and 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 EDS and the reality of what was happening. When he did have an opinion on the situation, his words usually hurt me and reduced me to tears. I didn't understand how I could be living with someone who just didn't have any compassion towards the situation.
He is completely different to me, I say that we are chalk and cheese, we have polar opposite opinions and emotions. For a long time, we barely acknowledged each other in the house, considering we only have each other as siblings this probably wasn't the best thing to do. You don't always like your siblings but you love them unconditionally. I will say that as time has gone on, he has become more understanding (I hope) 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. He knows that I rely on a wheelchair if I venture out and that I am in the house 24/7. 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 too.
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.
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. 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 young people who may be feeling guilty towards your family during your chronic illness 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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