Feeling very alone

Hi there

I'm still having problems with the sciatica which seems to be worse than the RA pains since having that injection. Pain killers just aren't touching it.

Has anyone had this experience? Before I had RA and was more healthy I thought I had lots of friends. However, since I've been off work they seem to have vanished. I live alone and it's hard coping with the pain and the realisation of what having RA will mean to me in the future. It seems a double whammy that a lot of my friends seem to have vanished, as did my health.

Is it that people don't understand. If only they knew that a simple text message or phone call would make such a difference.

Traceyanne xx

13 Replies

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  • Hi Traceyanne I understand exactly what you are saying I too feel very alone especially when i have a flare. When I'm feeling unwell which is most of the time as its not under control at the moment as Ive not been on the meds that long its hard to have a social life. You are right people don't understand. To be honest until I experienced this neither did I. My auntie had severe RA and all I thought it was was a few aches and pains. I now know different!!. I just want you to know you are not alone. I am so glad I found this web site as I find there is always someone on here to answer a question or even just to offer support, Have you tried finding a group in your local area. and have you been on the facebook group 'Living with Rheumatoid Arthritis' its a great group to have a chat, support or for advice. Sorry I couldn't answer your question as I havent experienced that but do know exactly what you mean about feeling alone ((hugs)) x

  • Thanks Collette. I'm glad I've found this website too. As a newly diagnosed person I have so many questions going on in my head and am very scared about the future etc. I will look at the group on Facebook. I will also look at a local group too.

    Hope they sort your meds out soon.

    Tracey xx

  • Tracey, i find that people can't be bothered when you have left the workplace. I found out the same as you when i left work. They say we'll keep in touch, but they never do. I love this site as there are so many of you who are in the same boat as i am.

    Have you gone on facebook,i'm on there and the are things on there related to ra, ra chicks is one that i can remember.

    Welcome to this site we are a great group of people,ladies as well as gents.

    Sylvi.xx

  • Hi

    I found my true friends have stuck around and understand the variability of the disease. At work they are not interested and rarely ask me anything about ra and I never volunteer infomation.

    Thank god for my family inparticular my husband as he has been my emotional and physical support.

    I have found that I use facebook more now and I love to tweet. I also tweet about my ra and have linked nrsa to my account. The disease will not always be so bad, so when you are feeling up to it think about joining the local nrsa group to your area. I found mine, but unfortunately they meet during the working day, so I cannot attend. It does get better and this site helps alot, with general information and support.

    If your friends have not stuck around, then its there loss. You will feel emotionally better and do not dwell on the negative. Think positive - you've found a bunch of new friends on this site :)

    Take care hun

    Sci x

  • Hi Traceyanne,

    Sorry to hear you are feeling lonely at this time. This site gives a lot of support and I hope you find some comfort on here. You can always visit our Facebook group as well if you want to facebook.com/nationalrheuma...

    The Helpline team at NRAS are always here if you want to chat, their feephone number is 0800 298 7650. They could put you in touch with a telephone volunteer who can talk to you about their experiences (perhaps they use the same medication as you) which can be a real help.

    You may find that there is an NRAS Group near you and you might be able to attend a meeting with other local people to you who also have RA nras.org.uk/help_for_you/nr...

    We also have a secure forum for our members if you are interested please have a look nras.org.uk/help_for_you/me...

    I hope this helps and you find some support from all of these sources.

    Kind regards,

    Ruth

    Online & Social Media Coordinator

    NRAS

  • TraceyAnn, I also understand what you are going thru. I think our friends do not know how to handle this condition. Maybe they are afraid that since it happened to us, they are concerned that it could happen to them also. It is a very lonely condition. No one seems to understand the pain and fatigue we go thru. Thankfully I do have my husband and a very dear friend who do seem to understand a little more than others. I will be praying for you. There is someone who will understand you and what you are going thru. this site is wonderful. People who do care and understand. Gentle hugs coming your way. God Bless. Linda

  • Hi Traceyanne,

    Sorry that you are feeling lonely. I know that lots of us are in the same place, which is why we join together in places like this. Others definitely find it hard to understand our illnesses and I think they just forget, they don't mean to but because we are not under their noses in their busy lives, it just happens sadly. Perhaps try to text and suggest a coffee/cake outing or a glass of wine on their way home.

    Otherwise perhaps join a group like reading or volunteer if you are well enough. Also I chat to other patients at my hospital appointments - sommetimes comforting as they are there for the same thing as you.

    I know it is easy to say but I think you need to take things one day at a time as it is frightening to think about what coud happen. Try to make it a good day at a time.

    Thinking of you.

    Hugs.

    Lorna x

  • Traceyanne i completely agree, i used to be the hub of a group of friends and alot of the time that they now meet up are in places where i can't possibly go - up steps or where you can't park outside and i am devestated that they are blind to this and just think i am unreliable now.

    I am still in work which obviously makes life alot less lonely.

  • Many thanks everyone for your kind words and advice. It's such a comfort being able to share worries and thoughts with people who understand.

    Traceyanne xx

  • Hi Tracey,

    Really sorry to hear that you are going through it, is is tough, I have been through the same situation trust me, and it adds to the pain you already expereince. You can check me out on facebook too, alway leave a message on here. We will understand how you are feeling. Hang on in there. Hugs to you and thinking of you Paula x

  • Hi Paula

    Hope you had a good weekend. How canI find you on Facebook?

    I'm off to hopsital today for ~DXA scan and to see the nurses. Hoping they will put me on medication.

    Tracey x

  • Tracyanne, I was once right where you are. I had to take Social Security disability at age 53, after a huge flare in my feet that put me in the hospital, and I had already had 4 of the 8 spine surgeries, so there was no way I could continue my profesasion of Medical Laboratory tech. I had good friends at work, but once I was not going to go back to work, we slowly lost touch. Just that they continued to work and manage home and family, and I was alone. We were congenial when we ran into each other around town, and a couple times my closet friends called. After a year or so, I started calling my friends, suggesting we meet for lunch, invited them over for the same here, and gradually, we learned we really liked each other and laughed and enjoyed being together away from the stresses of work. I have acquired many new friends, have even introduced some of them to my older friends, over coffee, or tea.

    I guess what I want to say is, we have to take our lives in hand and make things happen. There will be lots of times you won' feel like it, but if you have a better day, pick up the phone and call somebody. Maybe they too are wishing they had a friend to talk to, or get away from the house for a while.

    I wish you all the best, Loretxxx

  • Thanks Loret. I'm hoping to eventually go back to work, but I guess it depends on how I respond to the medication. I think at the moment I'm going through a grieving process for my previously `sort of healthy body', also shock, anger and feeling upset. I guess it's the sort of process any of us go through. It's a lot to take on isn't it.

    Thank you for your email, cos it has given me some hope. I think that's a good idea getting people to come round to me.

    Take care.

    Traceyanne xx

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