Loneliness is rotten!

I'm feeling so lonely tonight. One of the challenges with chronic illness is that when I'm sick I have to cancel things and don't mind too much because I feel so unwell, or in so much pain that I'm focused on that. Then on the day here and there where I feel pretty good and would like to do something or go somewhere I feel as though I don't have any friends. I know I do, but they're not as close as I would like. It takes a lot of patience and effort to stay close to someone with a chronic illness. I think those people are rare. 😢

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So true. I too have lost many many friends...so beit...So wanna be my friend? :)

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Thank you, Suzanne! I'd love to be your friend! I am overwhelmed by all the kind responses on here! Makes me feel less lonely! Message me anytime! Sometimes I don't get on for a few days in a row, so don't be surprised if I take a bit to answer. I hope you have a great day! ❤️

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I agree this is very very true I don't have many friends too because of this disease. Even work colleagues don't include you in anything.

The disease is invisible and you are invisible that's how it felt yesterday morning at work. Something was said and I responded straight away and don't always say the right thing but it was said and was taken the wrong way.

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Obviously I look really well from the outside because I'm often told this but from the inside I feel dreadful.

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Yes! I ran into someone at the store the other day and she said I looked good. I limped out of the store, but she didn't see that. I felt like I could see the wheels turning in her head wondering if I was really sick all those times I cancelled. I really hate that. 😕 But we know it's real! I'm glad we're not alone! ❤️

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Are we related 'cos I have the same problem? Foot in mouth disease I call it. On a good day I can get both size 5s in and my ankles get damp. Hugs

Jan

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Hi Sophie, I'm sorry you're feeling lonely. RA can make you feel very isolated, especially as it's invisible.

When I was diagnosed, I quickly learned that having a handful of close, true friends meant more than a bunch of acquaintances who didn't understand. One thing that helped me in my social life was becoming the organiser. I always was the social secretary but took the lead a bit more and was able to steer activities towards things that were achieveable for me and didn't involve, for example, lots of walking. The other thing that helped was being really, really honest and telling my friends the truth instead of hiding behind "oh I'm ok". I found that once I was open and honest, they remembered how difficult things are for me and adapted things.

You are never alone on here.

From a fellow Sophie

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Thanks! That's a good idea! I do organize things sometimes, but when I need it most sometimes it's hard to speak up. I need to get better at that! Sending you hugs! ❤️

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I agree .

Most of the people I know , have absolutely no idea what we r going through ....

We could be friends ?

Xxx

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So true! I would love to be your friend! Message me anytime! I'm on here at least a few times a week, usually. I wish people could go through this for just a few days to have a glimpse of it. Im so grateful for all the kind replies on here! It makes me smile and feel so much better! I hope you'll let me do the same thing for you if you need it! ❤️

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Hi there Sophie ,

I hope you had a good day today! I had an ok day . I did go to a friends 50th , caught up with another aquaitence , who told me at least three times how good and healthy I looked .!!! I know she had good intentions , but , ......

My back , ankles and feet were killing me (you know what I mean....).at the time , what can you say ? I actually did comment how a bit of makeup helps.!! Anyway .....

I am glad to hear that comments given here , put a smile on your dial !

👍

😁😊😀😁😊

Karen xx

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Hi there!

It is so difficult to know what to say with comments like that when there are good intentions! I'm glad you were able to go. I feel like I'm always in battle with myself about going to events or staying home. It takes courage when you're not feeling great and don't know if there will be comfortable places to rest and if the temperature will be ok. Things many people would never consider. I need to push myself to go places more. I'm usually glad when I do. Hope you're doing well today! I think my Enbrel is helping and I'm crossing my fingers at the same time I'm trying not to get my hopes up! LOL! Hope you have a lovely weekend!

😊

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Let's all be friends!

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👏👏👏👏

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Oh bless you. I'm so sorry you feel so low at the moment, Sophie. This can be a very isolating disease that few know about and fewer understand. My old Nan used to say " nothing lasts forever, good or bad". Huge hugs

Jan

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Thanks Jan, it has helped so much reading all these replies today! Sending huge hugs back and I appreciate your Nan's advice. I forget that sometimes!

xx

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Hi Sophie,

Sorry you feel bad..I check in here several times during the night, if you're lonely and want to chat, "ping me"! I'm in the U.S.(west coast) so I'm around late if you can't sleep and need to chat.

Hugs,

Dani

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Thanks, Dani! Such a kind offer! I can't tell you how much all this kindness has helped my heart today! I'm not on here everyday, but I'm happy to be a support to you as well if you ever need it! This site is amazing! Hugs! ❤️

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We are kindred spirits lol I am a serious dog lover and my pet supply store was named Sophie's Pet Palace 😜

I am sure I speak for everyone when I say , you are not alone.

I had two businesses and managed my husbands plumbing business. I went from fourteen hour work days to sudden stop.

I did not mind the first eighteen months. I could barely sit up and was far to ill to do anything. I am now joining PVN Patient voices network. It is a Patient Partner Program in which you participate in policy making committees. I am Canadian but I have no doubt similar programs exist in all countries.

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Shorter reply, yes loneliness SUCKS!

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You've definitely hit the nail on the head with that one - chronic disease show you who your true friends really are,and unfortunately for me,it's cost me pretty much my whole social circle,and some of my family - I understand they have life's to get on with,but when you've been ignored for the best part of three years,it does get you down.... esp if you're living on your own and staring at the inside of the same house for weeks at a time😩

Keep smiling,your real friends will be there for you no matter what,and it's those people,even if they're only at the end of the phone,that make all the difference between me wanting to just lock the doors and stay hidden,or mustering the strength to get out of the house - even if it's for just an hour a week to the local shops - that teeny bit of social interaction really can make all the difference when you're feeling low x

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