Family Issues
Family Matters
By: Tracy Zuckerman
Living with chronic pain has taught me that there is another dimension to myself. I have opened my eyes, ears and mind – all of my senses have become tuned into my body and how it reacts to living with chronic pain. I have lived with a chronic pain condition called complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD), and I have aggressively involved myself in treatments and therapies to help me deal with all of the emotional, mental, and physical issues related to my pain.
Learning to "think outside of the box," listening more attentively and carefully when doctors and therapists explain things to me, seeing things through a different perspective and learning to be more open to ideas that help to activate the mind-body connection are essential to my moving toward wellness. Constantly testing my limits with treatments and therapies is a very challenging and debilitating way to survive, but it's absolutely necessary. Pain has created a tension between my body and mind – my mind is willing and able, but my body sometimes isn't. It has tested the endurance of my marriage and put a tremendous strain on my relationships with my family and friends.
There is always an emotional component to pain. And how we react and cope with it directly affects the world around us. When I have a flare-up, I tend to withdraw from my family, and I can get very cranky and emotional. It has been a learning process for me to express to them that I need space. I used to console myself with writing – keeping a pain journal was therapeutic.
My husband has had a tremendous amount of patience with and acceptance of me. When our children were younger, my husband would get dinner ready and sit and discuss with them what was going on – that I was suffering and they could talk about how they were all hurting as well. I believe that this helped to give me the space I needed to grow and fight my way out of the deep dark box that had caged me in while living with CRPS.
When I needed to isolate myself or was in too much pain to function, he still needed to live his life. At times he had to resent the fact that I would not make any plans to go out and socialize. There was a world outside of my life with CRPS – even if I could not find it, he needed to and he did. Going out and trying to live his life but unable to have his partner join in with him had to be difficult. My illness was affecting my husband and family, and our lives changed direction even if we did not realize it at the time.
I would always say to my husband, "You really do not understand!" But he had his own perspective on it and had great insight. He realized that I needed support from others, aside from him. Chronic pain drains your emotions and self-esteem and can deprive you of the ability to live in the moment. My husband asked our family to try to be more supportive of me and open their hearts to have some compassion, telling them I was already fighting a war within myself. I just wanted everyone to know that I was trying to get better but I could not control the course CRPS would take me on.
Our children, on the other hand, might not have been old enough to have developed these same coping skills. My daughter was watching me lose my ability to function the way that I once did. I was not well enough to follow through with many daily tasks, much less be attentive to all of her needs. What a very depressing time for both of us. It would take years before I would resurface to my old self and function without the constant daily pain and suffering. During this time she became withdrawn and angry. I wish I could have given her more of myself. There is a grieving process that all people suffering from chronic pain go through, but their families and support systems grieve too.
Now that the kids are much older and wiser, they have a greater understanding and compassion for things. Now, when I have flare-ups, they try to console me and help me get through it. They have seen me at my worst and my best. We have started to talk about the past as I have progressed – I am now able to share with them more detailed information about the different treatments and medicines that I am trying. I can only hope that they will have more knowledge about health care and always know to be an advocate for themselves in the future!
Emotionally I was able to use therapies, such as relaxation techniques and meditations, for the anxiety that came with each pain cycle flare-up. But chronic pain also plays havoc with your neurological abilities. My ability to stay focused and remember things became a venue for my family to joke about and laughter became a part of our healing too. But the truth is that I am different now and have some limitations at times.
Recently, my son asked for my help with some travel plans while I was in the middle of a flare-up. Even though I tried to stay focused mentally, it was too difficult and my energies were zapped from the pain cycle. We all have lived through many different types of flare-ups with my illness, but each time I find myself having to explain that I just can't do it right now. I ask them, "Do you understand?" and I always wonder if they do. They do not always respond to my question and it's difficult because I wish they would at least share their thoughts. Since I have done so much talking about my illness, I think they have learned to be good listeners instead.
Chronic pain creates changes within a family, and each of us responds and copes differently. It's important to encourage your family to participate in family therapy sessions because it is essential that everyone in the family is able to communicate with each other. Our family participated in family therapy within the first year or so after my diagnosis. Therapy gave the kids the opportunity to learn that there were many ways that we could all share thoughts about what was going on. It allowed them a venue to digest information and know they would always have an opportunity to discuss any type of emotion they were experiencing. Of course, since they were teenagers, they seemed to spend most of their time just listening!
It's so very difficult to understand this combat that goes on between our minds and bodies so we project that insecurity to those around us. Socially, pain can isolate you from friends. They might not understand or may not be comfortable around you when you are suffering. I was encouraged to keep a pain journal, and this inspired me to learn as much as I could about CRPS. I became a walking, talking CRPS encyclopedia, ready to talk about it to anyone. Open communication helps with friendships as well as family relationships. The vicious cycle of emotional ups and downs that are part and parcel of living with chronic pain must be dealt with just like the pain itself. Do not ignore the emotional and social issues – confront them and learn to accept the changes and limitations in your life. Take advantage of the good days and revert back to normalcy whenever you can.
I encourage you to seek out therapies, both alternative and mainstream, to find what works for you. For information about CRPS, visit Complex Regional Pain Syndrome on the National Pain Foundation web site. There are therapists who are trained to help individuals and families cope with medical conditions. As unique individuals, we each have different abilities. Patience is a true virtue when you are living with chronic pain – cultivate it with those around you and use it wisely. Involve your family by always communicating with them but also remember that they need support as well. They are living through it with us, even if we are uncertain whether they understand it all. For me, this means thanking my family for the things that they do for me. I also try to focus on their lives and get involved whenever I can. This helps me not dwell as much on me. I am thrilled to watch them live healthy, normal lives.
Get started today working on your well being and pulling from the strength that your loved ones have to offer to you. Become an advocate for your own health.
Tracy was diagnosed with complex regional pain syndrome after a serious car accident. To read more about her experiences with CRPS, read "Thinking Outside the Box."
To keep a personal pain journal, log-in to the NPF web site.
Learning to "think outside of the box," listening more attentively and carefully when doctors and therapists explain things to me, seeing things through a different perspective and learning to be more open to ideas that help to activate the mind-body connection are essential to my moving toward wellness. Constantly testing my limits with treatments and therapies is a very challenging and debilitating way to survive, but it's absolutely necessary. Pain has created a tension between my body and mind – my mind is willing and able, but my body sometimes isn't. It has tested the endurance of my marriage and put a tremendous strain on my relationships with my family and friends.
There is always an emotional component to pain. And how we react and cope with it directly affects the world around us. When I have a flare-up, I tend to withdraw from my family, and I can get very cranky and emotional. It has been a learning process for me to express to them that I need space. I used to console myself with writing – keeping a pain journal was therapeutic.
My husband has had a tremendous amount of patience with and acceptance of me. When our children were younger, my husband would get dinner ready and sit and discuss with them what was going on – that I was suffering and they could talk about how they were all hurting as well. I believe that this helped to give me the space I needed to grow and fight my way out of the deep dark box that had caged me in while living with CRPS.
When I needed to isolate myself or was in too much pain to function, he still needed to live his life. At times he had to resent the fact that I would not make any plans to go out and socialize. There was a world outside of my life with CRPS – even if I could not find it, he needed to and he did. Going out and trying to live his life but unable to have his partner join in with him had to be difficult. My illness was affecting my husband and family, and our lives changed direction even if we did not realize it at the time.
I would always say to my husband, "You really do not understand!" But he had his own perspective on it and had great insight. He realized that I needed support from others, aside from him. Chronic pain drains your emotions and self-esteem and can deprive you of the ability to live in the moment. My husband asked our family to try to be more supportive of me and open their hearts to have some compassion, telling them I was already fighting a war within myself. I just wanted everyone to know that I was trying to get better but I could not control the course CRPS would take me on.
Our children, on the other hand, might not have been old enough to have developed these same coping skills. My daughter was watching me lose my ability to function the way that I once did. I was not well enough to follow through with many daily tasks, much less be attentive to all of her needs. What a very depressing time for both of us. It would take years before I would resurface to my old self and function without the constant daily pain and suffering. During this time she became withdrawn and angry. I wish I could have given her more of myself. There is a grieving process that all people suffering from chronic pain go through, but their families and support systems grieve too.
Now that the kids are much older and wiser, they have a greater understanding and compassion for things. Now, when I have flare-ups, they try to console me and help me get through it. They have seen me at my worst and my best. We have started to talk about the past as I have progressed – I am now able to share with them more detailed information about the different treatments and medicines that I am trying. I can only hope that they will have more knowledge about health care and always know to be an advocate for themselves in the future!
Emotionally I was able to use therapies, such as relaxation techniques and meditations, for the anxiety that came with each pain cycle flare-up. But chronic pain also plays havoc with your neurological abilities. My ability to stay focused and remember things became a venue for my family to joke about and laughter became a part of our healing too. But the truth is that I am different now and have some limitations at times.
Recently, my son asked for my help with some travel plans while I was in the middle of a flare-up. Even though I tried to stay focused mentally, it was too difficult and my energies were zapped from the pain cycle. We all have lived through many different types of flare-ups with my illness, but each time I find myself having to explain that I just can't do it right now. I ask them, "Do you understand?" and I always wonder if they do. They do not always respond to my question and it's difficult because I wish they would at least share their thoughts. Since I have done so much talking about my illness, I think they have learned to be good listeners instead.
Chronic pain creates changes within a family, and each of us responds and copes differently. It's important to encourage your family to participate in family therapy sessions because it is essential that everyone in the family is able to communicate with each other. Our family participated in family therapy within the first year or so after my diagnosis. Therapy gave the kids the opportunity to learn that there were many ways that we could all share thoughts about what was going on. It allowed them a venue to digest information and know they would always have an opportunity to discuss any type of emotion they were experiencing. Of course, since they were teenagers, they seemed to spend most of their time just listening!
It's so very difficult to understand this combat that goes on between our minds and bodies so we project that insecurity to those around us. Socially, pain can isolate you from friends. They might not understand or may not be comfortable around you when you are suffering. I was encouraged to keep a pain journal, and this inspired me to learn as much as I could about CRPS. I became a walking, talking CRPS encyclopedia, ready to talk about it to anyone. Open communication helps with friendships as well as family relationships. The vicious cycle of emotional ups and downs that are part and parcel of living with chronic pain must be dealt with just like the pain itself. Do not ignore the emotional and social issues – confront them and learn to accept the changes and limitations in your life. Take advantage of the good days and revert back to normalcy whenever you can.
I encourage you to seek out therapies, both alternative and mainstream, to find what works for you. For information about CRPS, visit Complex Regional Pain Syndrome on the National Pain Foundation web site. There are therapists who are trained to help individuals and families cope with medical conditions. As unique individuals, we each have different abilities. Patience is a true virtue when you are living with chronic pain – cultivate it with those around you and use it wisely. Involve your family by always communicating with them but also remember that they need support as well. They are living through it with us, even if we are uncertain whether they understand it all. For me, this means thanking my family for the things that they do for me. I also try to focus on their lives and get involved whenever I can. This helps me not dwell as much on me. I am thrilled to watch them live healthy, normal lives.
Get started today working on your well being and pulling from the strength that your loved ones have to offer to you. Become an advocate for your own health.
Tracy was diagnosed with complex regional pain syndrome after a serious car accident. To read more about her experiences with CRPS, read "Thinking Outside the Box."
To keep a personal pain journal, log-in to the NPF web site.