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The psychological aspect of dealing with bronchiectasis and MAC.

Posted by @windwalker, Wed, Jun 20 11:00am

Whenever there is chronic illness, depression, and other phychological issues like anger, and low self esteem can creep into your life. Is this normal? How do we deal with that? I’d like to invite a fellow member, @megan123, a retired social worker; to join this conversation.

REPLY

Dealing with Lung Diease, MAC, MAI, Psedomonas etc….is very difficult, and emotionally can lead to depression and anxiety, especially when first diagnosed…this is so normal…and happens to us all, to various degrees, depending on your diagnosis and the severity of symptoms…it's comparable to the grief we experience, when losing someone…This is the same type of grief with loss of health…symptoms including lack of joy, and reduced interest in things that used to bring us happiness. depression seems to be more common among women than men…it's important that we recognize the symptoms of depression, and get the support that we deserve…Many times our friends and family members don't understand what we have to deal with our Lung disease, which can isolate even more..This support group empowers us to learn as much as we can about our disease, but the emotional journey, I find is just as important as important, if not more so because it impacts on our physical health as well. I continue to experience the roller coaster of emotions, but have a therapist that helps me with my spiritual journey of mindfulness and awareness for the unchartered road ahead…peace and love.

@megan123

Dealing with Lung Diease, MAC, MAI, Psedomonas etc….is very difficult, and emotionally can lead to depression and anxiety, especially when first diagnosed…this is so normal…and happens to us all, to various degrees, depending on your diagnosis and the severity of symptoms…it's comparable to the grief we experience, when losing someone…This is the same type of grief with loss of health…symptoms including lack of joy, and reduced interest in things that used to bring us happiness. depression seems to be more common among women than men…it's important that we recognize the symptoms of depression, and get the support that we deserve…Many times our friends and family members don't understand what we have to deal with our Lung disease, which can isolate even more..This support group empowers us to learn as much as we can about our disease, but the emotional journey, I find is just as important as important, if not more so because it impacts on our physical health as well. I continue to experience the roller coaster of emotions, but have a therapist that helps me with my spiritual journey of mindfulness and awareness for the unchartered road ahead…peace and love.

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That is very good advice and very well said!

@megan123

Dealing with Lung Diease, MAC, MAI, Psedomonas etc….is very difficult, and emotionally can lead to depression and anxiety, especially when first diagnosed…this is so normal…and happens to us all, to various degrees, depending on your diagnosis and the severity of symptoms…it's comparable to the grief we experience, when losing someone…This is the same type of grief with loss of health…symptoms including lack of joy, and reduced interest in things that used to bring us happiness. depression seems to be more common among women than men…it's important that we recognize the symptoms of depression, and get the support that we deserve…Many times our friends and family members don't understand what we have to deal with our Lung disease, which can isolate even more..This support group empowers us to learn as much as we can about our disease, but the emotional journey, I find is just as important as important, if not more so because it impacts on our physical health as well. I continue to experience the roller coaster of emotions, but have a therapist that helps me with my spiritual journey of mindfulness and awareness for the unchartered road ahead…peace and love.

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Such eloquent words and all are so true. I was very depressed at first, was diagnosed in 2016, but through prayer and supplication, I am doing very well. I do not take any antibiotics anymore, my pulmonary doctor is just watching me now and I feel great!!!!!

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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Sophie, I think you expressed very well what a lot of us feel or have felt. Mac really affects life style,is often very limiting and it doesn't help to be floundering around in the dark trying to find something to make it better. Fatigue often leads to depression. Mac is isolating. I've yet to meet someone in person who has it. And, because it's rather rare, people have difficulty understanding why it's so limiting when you appear to look ok. Fatigue, especially when it comes and goes, is difficult to describe. Trying harder often makes it worse.I've given up talking about it with family and friends. They ask how I am and I either say ok or a little weak. Most people feel a bit weak now and then but it goes away. And here you are up and down, strong in the morning and weak in the afternoon.

Flib…that's why it's so important to speak our truth, regardless if family and friends don't get it…a small handful are hopefully trying to, and those are the ones that will help us journey through our challenges

@megan123

Dealing with Lung Diease, MAC, MAI, Psedomonas etc….is very difficult, and emotionally can lead to depression and anxiety, especially when first diagnosed…this is so normal…and happens to us all, to various degrees, depending on your diagnosis and the severity of symptoms…it's comparable to the grief we experience, when losing someone…This is the same type of grief with loss of health…symptoms including lack of joy, and reduced interest in things that used to bring us happiness. depression seems to be more common among women than men…it's important that we recognize the symptoms of depression, and get the support that we deserve…Many times our friends and family members don't understand what we have to deal with our Lung disease, which can isolate even more..This support group empowers us to learn as much as we can about our disease, but the emotional journey, I find is just as important as important, if not more so because it impacts on our physical health as well. I continue to experience the roller coaster of emotions, but have a therapist that helps me with my spiritual journey of mindfulness and awareness for the unchartered road ahead…peace and love.

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To be honest with you all; I have had this for so long that I just accept it as my norm now. I am pretty sure that I have gone through all of the steps to get to acceptance. Thankfully, I am in a good place now. My bronchiectasis is stable, fingers crossed, mac & pseudomonas are still in remission. I know it is emotionally difficult when you are first diagnosed, and when you are fighting an active infection. Hugs to you all – Terri

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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Sophie….what helps is daily exercise, vitamins, praying constantly and surrendering, some kind of therapist that can help us with this journey, mindfulness, and a few close friends to distract us with fun things to do….all help in some way or another…I find the spiritual journey the most important as it helps me with depression, when it hits…anxiety there are simple cognitive strategies that really help.

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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@aflib You are so right about being strong in morning and weak in the afternoon. I try to tackle the important things in the morning because by afternoon, I am horizontal. I am still trying to be more organized with meal planning and do more of the labor intensive parts in the morning. My husband does most of the cooking for evening meals, I mainly take care of the sides or else we'd never eat vegetables.

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@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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@jkiemen, Hi Jo Ann. I am concerned about your depression, especially when you say that you fear it is getting worse. Can you seek counseling so that you can learn to cope with this better? I wonder if taking a short break from us here on Connect would help. I have had two other members tell me that they had to stop looking on this site every day because it was a constant reminder of their disease and was putting them in the 'victim' role. Also, reading some of the posts brings on yet one more thing to worry about. A break from us might allow you to reset your mind – take a vacation from thinking about mac. Go to the movies or visit friends….. I am sending you extra cyber hugs.

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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So true Megan. I have a lot of supportI've friends who check in constantly, and my husband, WOW!!! He is so loving and understanding. So just keep going, don't give up. Feel free to ask me any questions you have. I have been to the bottom, and now I'm on top!!!!

Very well said! Thank you! The one thing that I find annoying is that people always say I look so good. They can't believe that I am suffering with
pain, frustration and depression! You're right about the energy level. Mornings are good. I tend to gradually fade after 1:00 pm. Living alone adds to the depression because there is no one to distract me from thinking about my limitations. Prayer is what keeps me going and gratitude for all that I am. It could always be worse. Hugs to all!

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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Sophie…thank you for your kindness and honesty

Hi, my name is Debra Simms and my 24 year

Hi, let me try again
I have a 24 yr.old son who I believe has mentally related anger issues.I have been trying to break the details of his life down and Realizing that every
individual is just that, an INDIVIDUAL,it is hard to
diagnose him with 1 named disorder.
Intermittent anger issues seems to fit his behavior. I feel many factors are responsible.
Joint custody, internet usage( non available @home), video games, EXPOSURE to LEAD! & more I can't think of at this moment. He has melt downs & I feel quite confident they are something
Directly and physically tied to some ACTUAL Thing in the house. I experience feeling sick indoors at same household. Do you have any suggestions?
I love my son and want him to be happy.
Thank you sincerely
deb

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