I have just been reading some of the posts here and realised that we have been blessed to have such a wonderful site where we can share our feelings and gain a lot of support to help us with our illness. I was chatting the other day to one of the residents in my community and that's when I realised that there are still so many people in our communities who still feel left out, forgotten or who just cannot be bothered to go out and socialise. It is not everyone who has a chronic illness who is lonley but there are still people out there who need support. Many are isolated because of mobility problems, some because of psychological effects of the disease.
I know there are people who can manage to go out and meet with others alike, but how about those who cannot. Those who have a 15 minute slot of care from the social services that they cannot have enough time to mix with others. How about that neighbour who you have not seen some time but turn a blind eye and just say, 'I guess they are fine, they just don't want to be bothered'. It could be that they just need someone to talk to. I know it is really difficult to lend a hand when yours is in trouble but why don't we all try and reach out to that person you know they are alone and offer support or just a few words of encouragement and motivation so we can take away that feeling of loneliness from someone for just few minutes to make them feel better.
There are those who cannot use the internet who do not know how to go about it when they needs support, and there are those who need someone to make them aware that there is help out there and that they don't need to be alone at all.
I think it is better to think of what to do if you feel like you are isolating yourself from others. At times it happens without realising it and it takes a toll on our health. Have a plan each day on how you want to spend your day and learn how to deal with situations when you feel lonely.
With chronic illness there are times we need that alone time, but if the alone time goes on from days to weeks and months on time then it becomes a problem. Let's be interactive and find those sources that limit social isolation amongst ourselves. Support groups, social activities, or chat, a chat with your neighbour can make a difference.
You are not alone! Let's work together to minimise isolation amongst us! Let's not make isolation take over our lives. Let's get out there or logon onto those support sites and find friends that can relate to what you are going through!
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Pipido36
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Excellent post Pipido36! One Monday morning my mum was coming out of the chapel after Mass when she turned to an elderly lady beside her and said "hello it's a lovely morning isn't it" the lady smiled at her and said " you're the first person I have talked to since Friday " and her eyes filled up.
I believe loneliness to be a serious chronic disease which unfortunately there are no medications for!
Hi Pipido36, I sometimes feel so alone, especially at the minute. My husband is supportive but I'm not sure he truly understands what we all go through from time to time. I'm currently signed off work and prior to that was working from home so I didnt have the interaction that I would usually have with my colleagues, my husband is the only person I talk to and have face to face contact with on a daily basis, I don't really want to speak to my family, I don't want to drag them down with my problems so when I do speak to them I pretend that everything is OK. I have tried to do what you suggested and have a plan, I went out shopping and had what i assume was a panic attack, I don't know why that happened..... I LOVE shopping.
I haven't yet been diagnosed and other than letting it all out on this amazing site I'm not sure if there are any groups in my area.
I am in a similar situation. I work from home and although I feel lucky to be able to do this, it is also very isolating. I have been hoping in the past few years to be able to reduce my pain enough to be able to work outside of the home but so far I don't feel like I am ready.
I really feel for you Bebe76, I've only been in pain since last October and have only worked from home for over a month, I'm on sick at the moment but I think the DR did that more because of my low mood rather than the pain. I've been OK for a couple of days now and could probably have managed to travel to work, even if I didn't do a full day.
I really hope you feel ready to go back to work soon. Sending you hugs.
Thank you so much, it means a lot. Low mood can be as bad as physical pain. I find sometimes having a break from work really helps with mood - it can be stressful being in pain while trying to maintain productivity.
Yes that's true. We need that time to relax and make sure we are not stressed. I have stopped work as it was really hard with pain. I am always in a very low mood nut have managed to motivate myself through different things like reading. Watching TV or just go for a few minutes walk to be out of the house. Physical pain is terrible so if not careful careful we will end up stressed as you said. Let's Stay positive!
I understand what you are going through. At least your husband Is still there supporting you. It is really hard for them to understand this illness, but I think the best is to let them know that they too can search for info and know more about the illness so it can be better to understand. As I said your husband is there (mine could not understand it so he left), let him know exactly how you feel and not hide it. As regards family, I used to be like you, pretend everything was OK when it was obviously not. Just give yourself time to think about sharing your problem with your family.... A problem shared is a problem solved as the saying goes. As for us it won't be solved. But at least we will know support is there if we need it from family members.
I'm not sure of where you are coz I know there are a lot of support groups in most arrears. Someone here can get you details if you let them know where you are.
I hope you will find someone or some group to share and talk about the predicament you facing.
You seem to me to be an amazingly positive lady and your husband clearly was not worthy! Thank you for your advice, I'll keep talking to my husband and I'm going to sit my daughters down and explain it to them too.
I live in East Yorkshire, I'd be really grateful if anyone could tell me if there are any support groups in this area.
Thank you so much. I hope you will find that thru talking to your family, things will be much easier per ser.
If you find you need to chat this is the place. I live in Stockton on tees so I guess am not very far from you. There is Teesside Lupus Support group if interested msg me.
Hi DLG682, The closest support group to you meet in Doncaster. Their next meeting is on April 2nd. If you'd like some more information about this then send me a private message and I can forward you some contact details.
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