Dealing with a loved one who has a chronic illness | A life of pain
Immediately when someone tells you about their chronic illness and how hard/difficult their life has become because of it, we are super sympathetic and offer to be there if they need anything. We assume that they have it the hardest, when really, loved ones can have it just as hard.
The thing we need to understand about Chronic illnesses is there isn't just one person suffering from their diagnosis. Loved ones will also go through everything with them and things can be just as difficult on them too.
This isn't just from an outsiders point of view but also from the person living with the Chronic illness. We assume that people don't understand because they can't feel our pain or they don't have it as bad as us because we are the ones living it.
When we have come to accept our illness and how to live with it, other people can find it more difficult than you to deal with.
What I am about to share with you is my honest experience of dealing with loved ones and living with a Chronic Illness. As I am writing this I am still not to sure if I am ready to post any of this yet as it is all very personal and really it isn't my story to tell, but I guess if you are reading this then I have decided it is time you learnt the truth behind living with a Chronic Illness.
You can't describe to someone what it feels like living in pain 24/7 and you can't describe to someone what level of pain you are in because everyone is so different. My pain scale of a 5 to you may be a 2 or maybe a 10. Until you are experiencing that pain physically you don't know. However, that isn't an excuse to shut people down because although they might physically not understand, thats not to say they don't want to know, or they aren't suffering seeing you in that pain. They do understand what it feels like to suffer. They are suffering by watching their loved one in pain all the time.
For me when my parents or boyfriend asked me on a daily basis how I am feeling, or what level of pain I was in I just used to say that I was fine or it's too much or 'It Hurts'. It used to frustrate me trying to explain my pain because it's not like I have broken my leg and sometimes the pain comes and goes, I am in constant pain, there is no break from it and when someone asks you how much pain are you in, it can be super frustrating. 'I am in lots of pain thanks, I am in pain all the time what difference does it make trying to explain to you how much pain I am in, you can't feel it, you don't understand, there is nothing you can do and it's never going to go.' When you are in pain 24/7, to be asked on a regular basis, how are you feeling can be so frustrating because you never feel 'better' than you did the day before, you can only ever feel worse. I can never turn around to my boyfriend or my mum or dad and say 'I am feeling really good today, I am not in any pain!' And to me that was something I thought only affected me.
What I wasn't thinking about is how it must feel being told by someone you love that they are in constant pain, to be shut down when all you want to know is how they are feeling and knowing there is nothing you can do.
It can put such a strain on relationships and you have to learn to be a whole lot stronger. I have learnt this the hard way.
A lot of the time when my pain is at an unbearable state I am in too much pain to feel emotion. Pain is all I can feel and think. When I am screaming and crying it's not because I am sad or angry, it is because the pain has taken over my whole body and I can't function. Sometimes the pain can put my body into total shock and I am unable to move or speak. At these times I don't experience any emotion or feel sorry for myself. I feel pain and pain only.
What I don't think about is how my boyfriend must feel when he is laying next to me whilst I am crying my eyes out in agony or in a total state of shock. I don't think about the emotions running through his head. The worry and panic because I am crying my eyes out and can't even speak, what should he do? What can he do? Does he touch me or will that make me worse? Does he try and speak to me or will that frustrate me because it's too much for me to take in? Should he call an ambulance or will the pain relief eventually kick in? Am I dying because I have been unresponsive for 15 minutes and my breathing keeps stopping?
The upset because there is nothing he can do to help. There is only so much he can do to try and make things a bit easier for me, but that doesn't take away the pain. Watching me laying there in complete agony or totally unresponsive, when he would lay his life down for mine, but right now there is nothing he can do.
The feeling of total helplessness because he is my boyfriend, he takes care of me and does all he can to make me happy and right now he can't do that.
The stress because he never knows if I am going to suddenly pass out or something is going to dislocate, if he is going to come from work and I am going to be curled up on the floor in pain, or passed out on the floor. What if I have passed out and hit my head so hard I could be dead? I'm not answering my phone, what could that mean?! Am I just sleeping or is something wrong?
Just like my pain, all these emotions are constant. They are there day in and day out, some days worse than others, but they never go and there will never be a cure for them.
You don't have to be the one with the chronic illness to live the affects it has.
If you are living with a chronic illness, remember your loved ones are living it too and if you know someone who has a loved one with a chronic illness, you need to be there for them just as much too.
Just because you are living the pain, it doesn't mean others don't understand how hard it is living that way.
The thing we need to understand about Chronic illnesses is there isn't just one person suffering from their diagnosis. Loved ones will also go through everything with them and things can be just as difficult on them too.
This isn't just from an outsiders point of view but also from the person living with the Chronic illness. We assume that people don't understand because they can't feel our pain or they don't have it as bad as us because we are the ones living it.
When we have come to accept our illness and how to live with it, other people can find it more difficult than you to deal with.
What I am about to share with you is my honest experience of dealing with loved ones and living with a Chronic Illness. As I am writing this I am still not to sure if I am ready to post any of this yet as it is all very personal and really it isn't my story to tell, but I guess if you are reading this then I have decided it is time you learnt the truth behind living with a Chronic Illness.
You can't describe to someone what it feels like living in pain 24/7 and you can't describe to someone what level of pain you are in because everyone is so different. My pain scale of a 5 to you may be a 2 or maybe a 10. Until you are experiencing that pain physically you don't know. However, that isn't an excuse to shut people down because although they might physically not understand, thats not to say they don't want to know, or they aren't suffering seeing you in that pain. They do understand what it feels like to suffer. They are suffering by watching their loved one in pain all the time.
For me when my parents or boyfriend asked me on a daily basis how I am feeling, or what level of pain I was in I just used to say that I was fine or it's too much or 'It Hurts'. It used to frustrate me trying to explain my pain because it's not like I have broken my leg and sometimes the pain comes and goes, I am in constant pain, there is no break from it and when someone asks you how much pain are you in, it can be super frustrating. 'I am in lots of pain thanks, I am in pain all the time what difference does it make trying to explain to you how much pain I am in, you can't feel it, you don't understand, there is nothing you can do and it's never going to go.' When you are in pain 24/7, to be asked on a regular basis, how are you feeling can be so frustrating because you never feel 'better' than you did the day before, you can only ever feel worse. I can never turn around to my boyfriend or my mum or dad and say 'I am feeling really good today, I am not in any pain!' And to me that was something I thought only affected me.
What I wasn't thinking about is how it must feel being told by someone you love that they are in constant pain, to be shut down when all you want to know is how they are feeling and knowing there is nothing you can do.
It can put such a strain on relationships and you have to learn to be a whole lot stronger. I have learnt this the hard way.
A lot of the time when my pain is at an unbearable state I am in too much pain to feel emotion. Pain is all I can feel and think. When I am screaming and crying it's not because I am sad or angry, it is because the pain has taken over my whole body and I can't function. Sometimes the pain can put my body into total shock and I am unable to move or speak. At these times I don't experience any emotion or feel sorry for myself. I feel pain and pain only.
What I don't think about is how my boyfriend must feel when he is laying next to me whilst I am crying my eyes out in agony or in a total state of shock. I don't think about the emotions running through his head. The worry and panic because I am crying my eyes out and can't even speak, what should he do? What can he do? Does he touch me or will that make me worse? Does he try and speak to me or will that frustrate me because it's too much for me to take in? Should he call an ambulance or will the pain relief eventually kick in? Am I dying because I have been unresponsive for 15 minutes and my breathing keeps stopping?
The upset because there is nothing he can do to help. There is only so much he can do to try and make things a bit easier for me, but that doesn't take away the pain. Watching me laying there in complete agony or totally unresponsive, when he would lay his life down for mine, but right now there is nothing he can do.
The feeling of total helplessness because he is my boyfriend, he takes care of me and does all he can to make me happy and right now he can't do that.
The stress because he never knows if I am going to suddenly pass out or something is going to dislocate, if he is going to come from work and I am going to be curled up on the floor in pain, or passed out on the floor. What if I have passed out and hit my head so hard I could be dead? I'm not answering my phone, what could that mean?! Am I just sleeping or is something wrong?
Just like my pain, all these emotions are constant. They are there day in and day out, some days worse than others, but they never go and there will never be a cure for them.
You don't have to be the one with the chronic illness to live the affects it has.
If you are living with a chronic illness, remember your loved ones are living it too and if you know someone who has a loved one with a chronic illness, you need to be there for them just as much too.
Just because you are living the pain, it doesn't mean others don't understand how hard it is living that way.
