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lauraliye

Feeling Alone

15 posts in this topic

I get the feeling sometimes that theres no one else like me. I've had Scleroderma for almost 4 years, and I'm surrounded by people who don't understand. There's no one I can talk to thats been through this. Is there anyone that knows what I'm feeling?


Lauraliye

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Sweetheart,

I think we all know what you are feeling. We've all been there at one time or another and it's a place that, unfortunately, gets revisited way too often. I've lost some very dear friends because they didn't understand and didn't want to accept that I had "changed." Well, it's their loss, not mine. I have found other friends (like all the members of ISN) that are just as dear as the old ones, probably more so because of their understanding and support.

 

There's lots of people here that understand, so you're in the right place.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Lauraliye,

 

You are in company of many friends here who feel exactly like you. It is important for you to be in supportive group like this.

 

Janey has said much better than I can summarize.

 

I know it is very difficult, but we need to get out and seek friendship/help from sources such as this group.

 

Please take care of yourself!


Kind regards,

 

Kamlesh

 

 

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Lauraliye... big hugs!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Lauraliye,

 

It is a sad but true reality of life that most people do not care to hear about illness and tend to shy away when an illness is chronic and not understandable to them.

I came to realize this disease took me years to understand and it still keeps me guessing at times. So I quit explaining it to anyone and have found friends in people who respect me and have compassion and like to have fun!!!!

And you are never lonely when you have all these people here who more than understand and can help you through the tough times. WE ARE HERE AND CARE!!!!!!

Your friend , Susie54

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Hi Lauraliye,

 

Scleroderma is a lonely disease. It is hard to understand for US let alone our friends and families.

 

I am glad you have come here. Welcome! You will find much support and understanding within this great group of people.

 

Keep on coming back. We're here for you.

 

Love and hugs,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello, Lauraliye, and welcome to the ISN Sclero Forums. It is difficult for others around us to understand - it is difficult for us to understand ourselves, sometimes, isn't it? The others are right, though, in that here you have plenty of people who do. I look forward to hearing more about you. In the meantime, you may find our page on Emotional Adjustment useful to read through. Hugs to you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Oh Lauralye,

 

My heart goes out to you, but I feel better, knowing you've come here.

 

You will find, very quickly, that we understand only too well, what you're going through.

 

Please rest assured... we are only a "click" away... whenever you feel a need for comfort and support.

 

Soft Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hey Laurelye, You are so not alone!!! This board is a great mood elevator because we ALL know what you're talking about! When no one has walked in your shoes there is no way they'll truely understand. That's why we're here! We all "get it" and will do the best we can to get you "through it"!!! Please feel comforted by all those sending you good feelings, hugs & embrace the love that's sent your way - it will help! Maybe where you live there is a support group that meets once a month? I found one here in GA and hope to go next week, of course that depends on how the day goes! Hang in there, we're with you!


Soft hugs your way,

 

Michele

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This is probably the only place you can come to, and NOT FEEL ALONE. We here, are all going through the same thing, pain,exhaustion, anger, sadness, etc. It doesn't matter how people, that are not sick, try to understand, they just plain can't. But having them try does help, a lot. I did lose some friends and that hurt very bad but I still have my family and thats all that counts. I'm sure they get overwhelmed too, just like us. I know that if the tables were turned and it was my husband who had this disease, i would have a hard time understanding all the different things that happen.

Like you we all fall down but we have to try hard and get up again.

Good luck and keep posting. Gizelle

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Hi Lauraliye,

 

Welcome to the Sclero Forums, where you've just adopted a huge family that absolutely understands what you are going through. *hugs* Please take your time reading through the posts and you'll find you are amongst those that are going through just what you are and who will have valuable insight to help you through the tough times.

 

Post often, ask questions and most of all, know you are not alone!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Lauraliye:

 

Talk about alone, I lost my children when they found out my diagnosis....lock, stock and barrel.....just moved out! They couldn't deal with it, and refuse to speak to me or see me and they live four miles away!

 

I used to hide my condition except for a select couple of friends. Now I say what it is, and have found no "shock" reactions to it. Instead, I have found friends being so supportive and positive.

 

In addition, I think my main sanity upon my diagnosis, was finding this website and all the beautiful people here who have bolstered my ego and accepted mye as a member to the inner circle "club" of a special group of us who share the same illnesses and symptoms.

 

Alone? You are not alone here........we care......we know.....we feel the same things you do. You are never alone here, and those that walk away (or run away), are those who would only bring you down. Here, you can only look up!

 

Always feel confident to post here, or if you want to contact any of us directly, just send us an email.......we are here for you always.


Tru

 

It is what it is...........

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Thank you so much for your warm words. I'd always wished to find people like me with this disease, but never expected this! Words cannot describe how amazing it felt to read all those replies-I was floored! Now, if I ever feel alone, I know where to go and who to talk to. Thanks again, I am so grateful! :)


Lauraliye

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Lauraliye,

I totally understand how you feel. In Finland it's impossible to find anyone with scleroderma, cause we have less than 500 cases among more than 5 million healthy one.

I bet none of my friends truly understand me, and even my boyfriend admits that he can never totally understand what I'm going trough, and what it's like to be me. I've stopped to try to make them understand, cause I've realized that it's enough if they understand why I don't have energy to do all the things and all the same options.

Emmi

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Thank you for taking the words right out of my mouth! I, like you, can't even say how I feel each day anymore as they don't want to hear it unless "I feel great!" which I don't. I know how you feel and how alone you feel. I know my husband cares but I also know that he's at a loss on how to help me and so he internalizes and shuts down and worries. I'm still so new at all lof this that I don't even know if what I'm feeling is sclero related or what. All I know, is that I'm so darned tired all of the time and I'm not able to work so the guilt and worry of that is starting to wear on me also.

 

Please know that even though I'm new to this I am still here for you! You, and everyone in this forum, are in my thoughts!

 

Thanks for listening.

 

Stay warm.

 

Peggy

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