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'A Patient Voice' Community

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This board is a place to discuss living with chronic illness and patient advocacy topics. If you have a medical question, please check the Health Experts tab to find a community that's right for you.

Last Reply:

The Loneliness of Chronic Illness

THE NATIONAL HEALTH COUNCIL

Richard M Cohen posted:

To all who read and care:

Many, even most, who have opened up and told their stories here project an unstated sense of loneliness. You do not share easily. For some, talking about your chronic problems is a new experience. Let me tell you, as one who has endured chronic conditions for well over half my life, aloneness is with me every step of the way. I have a loving wife and children, an emotional infrastructure that surrounds and comforts. Still, I feel I am alone. I just am.

Illness is a solitary battle. We die alone and so, too, suffer on our own. Nobody knows the experience or how we feel. How could they? Most of us do not want to inflict our pain on others. And so the hurt is buried deep within. We protect families and friends from tough realities. Is all of this good? Probably not. And so we seek out others traveling the same lonely highway. We long to touch and be touched.

We are not alone. Many of draw strength and support from others with the same conditions. We need each other and are there for others, day and night. Those who share the horror do not even need to be told. We just know. We do not have to be alone. Support is there for the asking. Reaching out to those who have been there allows us to accept love from those who have not.

My best,

RMC

28 Replies |Watch This Discussion | Report This| Share this:The Loneliness of Chronic Illness To all who read and care: Many, even most, who have opened up and told their stories here project an unstated sense of loneliness. You do not share easily. For some, talking about your chronic problems is a new experience. Let me tell you, as one who has endured chronic conditions for well over half my life, aloneness is with me every step of the way. I have a loving wife and children, an emotional infrastructure that surrounds and comforts. Still, I feel I am alone. I just am. Illness is a solitary battle. We die alone and so, too, suffer on our own. Nobody knows the experience or how we feel. How could they? Most of us do not want to inflict our pain on others. And so the hurt is buried deep within. We protect families and friends from tough realities. Is all of this good? Probably not. And so we seek out others traveling the same lonely highway. We long to touch and be touched. We are not alone. Many of draw strength and support from others with the same conditions. We need each other and are there for others, day and night. Those who share the horror do not even need to be told. We just know. We do not have to be alone. Support is there for the asking. Reaching out to those who have been there allows us to accept love from those who have not. My best, RMC

12 3

Dollbug responded:

Hello Richard....MiMi in NC........Caprice put a web link on the Fibromyalgia Exchange to share this with us....

This about sums it up.....I think the link should be put on all of Web MD's Exchanges....

Thank you so much for sharing....

MiMi

Report This| Share this:The Loneliness of Chronic IllnessHello Richard....MiMi in NC........Caprice put a web link on the Fibromyalgia Exchange to share this with us.... This about sums it up.....I think the link should be put on all of Web MD's Exchanges.... Thank you so much for sharing.... MiMi

pocotaz responded:

Richard,

I agree with this statement... i wanted to add that cronic illness also allows us to see just how strong we are..

To endure such trials while keeping silent is strength in itself... but you can still be in a room with hundreds of people and still feel alone...with or without an illness..

It is inner struggles that keep us from sharing with others for somehow we feel no one will understand...

Alot of us were brought up to grin and bear it... that this is life ...it is imperative that people know there are sites like these that can bring hope to thse who feel alone...

No matter how much support one gets from family and friends it is our illness to deal with..... alone... but in doing so i firmly belive that we need to be very forgiving of those who don't know what we go through...

I have often thought ...if i were not living with an illness ...would i understand ? In all honesty...my answer would be no... i am being true to myself...

How can i expect someone who isn't going through my illnesss to feel what i feel... they are affected in different ways... when they see changes in the person they love go from vibrant to almost lifeless...is very hard on them as well... their emotions are affected....

What saddenes me is the anger all go through... wether having an illness or not... it should be replaced by love if any emotion is to be felt...but we are human and living with illnesses brings out negative emotions...

My wish is for people --ill or not... to reach out to one another and know that there is a life line...

Thank you for sharing this...

Linda

Report This| Share this:The Loneliness of Chronic IllnessRichard, I agree with this statement... i wanted to add that cronic illness also allows us to see just how strong we are.. To endure such trials while keeping silent is strength in itself... but you can still be in a room with hundreds of people and still feel alone...with or without an illness.. It is inner struggles that keep us from sharing with others for somehow we feel no one will understand... Alot of us were brought up to grin and bear it... that this is life ...it is imperative that people know there are sites like these that can bring hope to thse who feel alone... No matter how much support one gets from family and friends it is our illness to deal with..... alone... but in doing so i firmly belive that we need to be very forgiving of those who don't know what we go through... I have often thought ...if i were not living with an illness ...would i understand ? In all honesty...my answer would be no... i am being true to myself... How can i expect someone who isn't going through my illnesss to feel what i feel... they are affected in different ways... when they see changes in the person they love go from vibrant to almost lifeless...is very hard on them as well... their emotions are affected.... What saddenes me is the anger all go through... wether having an illness or not... it should be replaced by love if any emotion is to be felt...but we are human and living with illnesses brings out negative emotions... My wish is for people --ill or not... to reach out to one another and know that there is a life line... Thank you for sharing this... Linda

THE NATIONAL HEALTH COUNCIL

Richard M Cohen replied to jambajuice's response:

Stuttering for most is an island, pulling those affected far away from the mainstream. That condition will bring a unique loneliness to all who struggle to speak normally and be taken seriously. Stuttering brings out cruelty in many who find it funny. If less obvious chronic conditions bring about isolation, stuttering, as with mental illnesses, carries a special stigma. With other conditions, isolation can be self-imposed. For stutterers, it is self-defense, a sad survival mechanism.

Chronic conditions are tough enough. A little kindness could go a long way.

RMC

Report This| Share this:The Loneliness of Chronic IllnessStuttering for most is an island, pulling those affected far away from the mainstream. That condition will bring a unique loneliness to all who struggle to speak normally and be taken seriously. Stuttering brings out cruelty in many who find it funny. If less obvious chronic conditions bring about isolation, stuttering, as with mental illnesses, carries a special stigma. With other conditions, isolation can be self-imposed. For stutterers, it is self-defense, a sad survival mechanism. Chronic conditions are tough enough. A little kindness could go a long way. RMC

THE NATIONAL HEALTH COUNCIL

Richard M Cohen replied to pocotaz's response:

Linda:

You have wonderful, generous instincts. You make an important point about strength at the top of your posting. Illness does teach us how strong we are. Truth be told, we are stronger than we think we are. How many times do you overhear someone telling another, I could never cope with that or I couldn't deal with anything like that. I just silently smile. How do they know until they've been tested. Most of us rise to the challenge. With a chronic illness, that can come everyday.

My best,

RMC

Report This| Share this:The Loneliness of Chronic IllnessLinda: You have wonderful, generous instincts. You make an important point about strength at the top of your posting. Illness does teach us how strong we are. Truth be told, we are stronger than we think we are. How many times do you overhear someone telling another, I could never cope with that or I couldn't deal with anything like that. I just silently smile. How do they know until they've been tested. Most of us rise to the challenge. With a chronic illness, that can come everyday. My best, RMC

An_188126 responded:

OMG YES! I feel like I am so all alone. People ask you how you are doing, but they really don't want to know.

I feel like I am all alone on a deserted island just itching and scratching and making more open sores.

I wake up in the middle of the night itching and hating myself for scratching, knowing the scratching could last for five to ten minutes at a time.

I itch 24/7 with no help available. Benadryl doesn't even work for me anymore. I am ammuned to everything. No creams... NOTHING!

I just feel like an itching, lonely, depressed freak that no one cares about. I just itch, scratch and cry. It seems like a curse.

The name of my condition is Pruigo Nodularis

Report This| Share this:The Loneliness of Chronic IllnessOMG YES! I feel like I am so all alone. People ask you how you are doing, but they really don't want to know. I feel like I am all alone on a deserted island just itching and scratching and making more open sores. I wake up in the middle of the night itching and hating myself for scratching, knowing the scratching could last for five to ten minutes at a time. I itch 24/7 with no help available. Benadryl doesn't even work for me anymore. I am ammuned to everything. No creams... NOTHING! I just feel like an itching, lonely, depressed freak that no one cares about. I just itch, scratch and cry. It seems like a curse. The name of my condition is Pruigo Nodularis

gms3393 responded:

Dear RMC,

You are not alone in that feeling I have battled a chronic illness they say should have killed me years ago. My father never wanted anyone to know I was sick like I had some weakness after his passing his family wanted to know what I did to get this. I almost lost my job after I was first diagnosed so I don't tell anyone anything . My dr's always want to use me like guinee pig and don"t listen to me and my concerns. Finacially ruined and still struggling. My husband and family are very supportive but I wish I could find someone like me.

gms3393

Report This| Share this:The Loneliness of Chronic IllnessDear RMC, You are not alone in that feeling I have battled a chronic illness they say should have killed me years ago. My father never wanted anyone to know I was sick like I had some weakness after his passing his family wanted to know what I did to get this. I almost lost my job after I was first diagnosed so I don't tell anyone anything . My dr's always want to use me like guinee pig and don"t listen to me and my concerns. Finacially ruined and still struggling. My husband and family are very supportive but I wish I could find someone like me. gms3393

MyHAk responded:

Thank you for helping me realize I am not alone in feeling so lonely. When I try to discuss it with my husband, he very considerately says you are going to be all right." I'm not going to be all riight physically and I wish I could talk about it. But, ...

Report This| Share this:The Loneliness of Chronic IllnessThank you for helping me realize I am not alone in feeling so lonely. When I try to discuss it with my husband, he very considerately says you are going to be all right." I'm not going to be all riight physically and I wish I could talk about it. But, ...

An_188127 responded:

I was so excited to see your message, thank you for sharing!
This is the first time I have ever responded on this site. I'm on it all the time, learning more about my Active Chronic Hep C.

We're not sure how I got it but I was quite wild in my younger days! I had 6 mos. of therapy, it came right back 1 mo. later with an addl. problem. I had a Stroke of the Optic Nerve on my left eye.

So, now I'm waiting to see if this new treatment will be something I'll want or be able to do. So life goes on! I write
poems for my personal therapy. But I still feel very alone with this disease.

I look healthy right now so people have a hard time understanding why I'm soooo tired all the time! They can't see the pain! I have family and people who do care, but I still feel alone. Yet, I do feel I have the strength to get through, because I have the Lord in my heart.

Again, it's nice to know there are alot of us out there who are in the same boat. And we can all help each other keep afloat for as long as our Lord will let us.

Best Wishes to All!

Report This| Share this:The Loneliness of Chronic IllnessI was so excited to see your message, thank you for sharing! This is the first time I have ever responded on this site. I'm on it all the time, learning more about my Active Chronic Hep C. We're not sure how I got it but I was quite wild in my younger days! I had 6 mos. of therapy, it came right back 1 mo. later with an addl. problem. I had a Stroke of the Optic Nerve on my left eye. So, now I'm waiting to see if this new treatment will be something I'll want or be able to do. So life goes on! I write poems for my personal therapy. But I still feel very alone with this disease. I look healthy right now so people have a hard time understanding why I'm soooo tired all the time! They can't see the pain! I have family and people who do care, but I still feel alone. Yet, I do feel I have the strength to get through, because I have the Lord in my heart. Again, it's nice to know there are alot of us out there who are in the same boat. And we can all help each other keep afloat for as long as our Lord will let us. Best Wishes to All!

rhcky responded:

My wife and I both are living with Chronic disease and pain, we find that there are very few who are interested in what we suffer so tend to keep quiet. Sometimes it is a stranger who displays more concern than friends or even family.
Dick Crane

Report This| Share this:The Loneliness of Chronic IllnessMy wife and I both are living with Chronic disease and pain, we find that there are very few who are interested in what we suffer so tend to keep quiet. Sometimes it is a stranger who displays more concern than friends or even family. Dick Crane

THE NATIONAL HEALTH COUNCIL

Richard M Cohen replied to An_188126's response:

I have not heard of Pruigo Nodularis. There are many more chronic conditions than any of us can name. And there are so many of us. Wouldn't it be wonderful if we were connected instead of crawling into our separate caves. I know you. You are me, and together we are all of us. Come out into the light and know you are not alone. I will scratch your back for you.

My best,

RMC

Report This| Share this:The Loneliness of Chronic IllnessI have not heard of Pruigo Nodularis. There are many more chronic conditions than any of us can name. And there are so many of us. Wouldn't it be wonderful if we were connected instead of crawling into our separate caves. I know you. You are me, and together we are all of us. Come out into the light and know you are not alone. I will scratch your back for you. My best, RMC

THE NATIONAL HEALTH COUNCIL

Richard M Cohen replied to gms3393's response:

And you are not alone. I do not know your condition. Find others with the same illness. Reach out. Touch and be touched. Strength spreads like an electric current. Come out f your hole.

My best,

RMC

Report This| Share this:The Loneliness of Chronic IllnessAnd you are not alone. I do not know your condition. Find others with the same illness. Reach out. Touch and be touched. Strength spreads like an electric current. Come out f your hole. My best, RMC

THE NATIONAL HEALTH COUNCIL

Richard M Cohen replied to MyHAk's response:

Why can't you talk about it? Turn your furies loose and let the fly away. Maybe they will disappear. Keep rubbing that lamp.

My best,

RMC

Report This| Share this:The Loneliness of Chronic IllnessWhy can't you talk about it? Turn your furies loose and let the fly away. Maybe they will disappear. Keep rubbing that lamp. My best, RMC

12 3

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