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The psychological aspect of dealing with bronchiectasis and MAC.

Posted by @windwalker, Jun 20, 2018

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

@thomasesmom

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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Hi there….you have it sounds, like 2 separate issues going on. It's so important that your son see a professional, for a proper diagnosis. The system doesn't partner you well, so as a mom hopefully your son will listen and get help, thru your local hospital, out patient mental health…

Liked by tdrell

@thomasesmom

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

Jump to this post

Hi @thomasesmom
I recommend that you start a new discussion and post about your situation in the Mental Health group. Currently your message is buried in a group dedicated to an infectious lung diseases, called bronchiectasis and MAC.

Here's how to start the new discussion:
1. Go to the Mental Health group https://connect.mayoclinic.org/group/mental-health/
2. Click START A DISCUSSION
3. Enter a title. For example "Anger Issues" or "How to help my son with anger issues"
4. Write your message.
5. Click CREATE DISCUSSION.

Liked by tdrell

@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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I u pnderstand! When I told my sister about it after my diagnosis, her reaction was—bearing in mind that her husband almost died from MRSA about seven years ago—“So what? I have MRSA colonized in my lungs.” Without getting emotional, I replied,”But you don't have an underlying lung disease. “True.” “And you're not immunocompromised.” (My spleen was removed in 1976.) “True.” That was the entire conversation. She seemed totally disinterested—my only sister! I was devastated.

@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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@franthony I am so sorry that your sis was not more compassionate and concerned. She is probably spinning from her own health issues and not willing to see that you are suffering…. And that you are also suffering from her cavalier comment. Well, I am glad you are here on this site surrounded by ladies that do care. I was rather startled by lack of comments or concern from my husband's family…nada, zip..zilch with the exception of my kind sister in law who has mountains of health problems of her own. I guess it just comes down to how much empathy other people have and ultimately if they can feel your fears, anxiety and suffering. I'd give her a little slack and she might just realize how serious your condition can be and that you need her support. I am sorry and feel badly for you but please know you can come here and you will find an understanding person that will hear you. Good luck to you…We are all sisters here!!

@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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@franthony All I can say is Wow. Obviously she does not understand what this is.

@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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Alleycatcate…..beautifully 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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Thank you for this post. I know it is a few years old but for someone who is new to dealing with this diagnosis and still trying to figure out treatment, your comforting words are timeless and priceless. it helps to know others felt the same feelings of sadness and loss when they learned of they had to deal with this illness. Feeling pretty sad right now but trusting in my physicians and myself to heal.

@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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@kiemen Just noticing you are dancing with the devil. Depression is a tough one. I wanted to mention something that I have recently come across that has had what I would call a dramatic effect on my mood. It is a supplement called SAMe. I do not think there is much difference in the brands…Most places carry it…drugstores, Walmart etc. I have found it more uplifting than an antidepressant…and it is a natural supplement. It helps produce and regulate hormones and is found naturally in our bodies..There are a few side effects (see below for Mayo site review) but usually not at a low dose, which is what i am on. The only problem is if you are already on antidepressants it is not advised to mix the two. It just seems to brighten everything….and believe me, I am not feeling terribly bright over contracting this disease but feel much better with this supplement. https://www.mayoclinic.org/drugs-supplements-same/art-20364924 I hope this might help you.

@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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Hi rwhite725…..you will be okay….Day at a time…this group is amazing for the knowledge and emotional support you get…we have all been there, and continue as warriors..

@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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Hi @rwhite725, welcome to the MAC & Bronchiectasis group on Connect https://connect.mayoclinic.org/group/mac-bronchiectasis/. I encourage to browse the various topics and discussions. You'll find a wealth of first-hand experience, information and support from fellow members, especially in the main discussion here:

– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

We look forward to getting to know more about you.

Liked by tdrell

@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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I'm a clinical psychologist and, in the past, have recommended SAMe to several clients who did not want to take an antidepressant It's used in Europe, quite a bit, I'm told.

It was helpful to some people, not to others and some had side effects like upset stomach.Glad it has helped you. It's a good reminder to keep trying. There are many things out there that can help. I'm so grateful to Terri for her recommendations. I'm in a better place because of them.

@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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@franthony, Hi there. I don't know why, but this is the first time I am seeing this post. I totally understand the hurt you feel about your sister's lack of empathy for you. My sister was the same way. I don't cough now and look good, but at the time that I told her, I was coughing violently for years, and hyper sensitive to everything, and repeatedly getting pneumonia. It was obvious something was very wrong with me. I really don't have any kind of relationship with her. My close friends are my sisters.

@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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@rwhite725, Hello and welcome to our Connect group. I apologize for not responding to you sooner. This site is a great place to share your experiences, ask questions, or just read. There are several ways to glean information that has been past posted. We have the 'Discussion Board' which pops up when you click on the 'Mac and Bronchiectasis Group'. The Discussion Board is great because it has Topics to choose from in dealing with this disease. You can read through everybody's posts as they appear on the thread, and you can click on member's @name to see all that they have posted. @katemn is a good one to click on as an example. Do you have a first name? Or would you prefer to be addressed as @rwhite725? I look forward to learning more about you. -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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@windwalker this is really helpful. My wife was recently diagnosed with bronch and I am trying to figure out how to change routine and add value… more value any way.

@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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@franthony,,,I have dealt with 3 sisters for 73 years so l can appreciate what you are feeling somewhat with the response from the sister saying "so what,,,etc" I can recall bitching about a nasty sister comment to a dear friend. Her comment was …."we can choose our friends but not our relatives" It is soooo true!!!! terri aka tdrell

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