The emotional cost of RA

When I got diagnosed I was living in a house full of people who for lack of a better description were big drinkers. I had to confine myself to my room to make living with them while I'll vaguely bareable. suffice to say they took it personally and I had to move out of the house because I didn't have the energy to deal with what ended up as bullying. I lost alot of friends over the coming year, some got angry with me because I couldn't go out and they thought i just didn't want to or i didn't have the energy to have them over to the house. Some turned on me because I wouldn't take either advice about quack remedies or I didn't want to listen to them telling me what to think feel or do about something they didn't know anything about. I surprisingly didn't mind losing alot of them I found alot of them had been draining me anyway so it was a sort of relief not t have to deal with that anymore. some were more upsetting, the ones who never called to see how I was or the ones that avoided my calls because they couldn't deal with it. I feel like I'm still losing friends because of this massive misunderstanding that people believe I can do something about this illness and I'm just not trying hard enough. I don't have a family to support me so I'm finding this immensly difficult and I'm trying really hard not to believe that everyone out there is just a selfish A-hole that can't deal with reality. I don't have anyone to talk to about this because as soon as I say anything to anyone they say" oh yeah it's the same as when I lost my friend so and so" and I'm sorry but it's not, it's not the same. I feel like I have to start from the beggining to meet new people and create new relationships because the people in my life just do not get it. does anyone else feel the same?

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  • Hi Su2po,

    I'm sorry you've been having so many problems with your friends - but this might be a blessing in disguise - you now know who your real friends are! It's not worth the stress, your health comes first! I understand how you feel - lots of people don't know how we feel, (and to be honest I didn't either - until I got diagnosed anyway!) especially the fatigue that comes with it all! I had a few friends who, when I couldn't come out or was complaining about pain, just stopped bothering with me. It upset me at first - but I now know who really care about me.

    Please don't feel like you are alone - there are lots of lovely people on here who know exactly how you feel and are more than willing to help if they can. Feel free to message me if you ever want to talk.

    Hope things get better soon,

    Tracy x

  • Thanks Tracy,

    I think I just needed to hear that, and have a bit of a dance. I think alot of it is due to the way my life was arranged before I got sick. I was a bit of a wanderer, it's hard to find support from people who barely know you. It's not exactly their fault either.

  • I do think it's best to remember the way many of us were before RA and how most of us knew very little about it I think. Just try to give people the benefit of the doubt unless they are actually offensive? I do really hate it when people come out with advice and get stroppy and resentful when I choose not to take it so I know exactly what you mean about that! and I deem that to be offensive!

    But I have stopped talking about it to people now because I suddenly realised I was becoming a bit of an RA bore and I feel as though I've turned a corner since waking up to this fact. I'm now identifying myself through being an artist again and only mention RA briefly if asked about it. But then this is easy for me because I'm currently very lucky that the drugs are working and feeling I'm well enough to be positive and upbeat. Nothing has made me appreciate life more than coming out of a year of pain to be well again even if it doesn't last I'm appreciating every moment of being able to move around. It's hard to stay positive when the disease is still active though.

    RA is so all consuming in the early days that many of us obsess on it a lot because that's a way of coming to terms with having this disease and the new med regime etc. I've probably lost a few friends along the way too but I reckon they can't have been real friends to be so easily lost!

    You could join an RA group perhaps or enroll in something new that is manageable for you and see if you can find new, more sympathetic and interesting crowd of friends? My parents are both dead so I know what you mean about family although I do have a husband and teenage sons - but they can be equally hard to reach at times of pain too you know. It's quite a lonely business but we have this place to boost each other onwards and stopping your wandering might be a plus in some ways too? - I hope you feel more positive soon. Tilda x

  • Sadly the closest RA group to me is the next county over and the northwest irish bus service is not reliable, chances are I would get stuck there if I went.

    I don't think I am a bore ( I know I have been) but I have come to terms with what I have had to give up. it's that they still get annoyed with me for having had to give it up. I have had to change my life really drastically. I used to travel europe regularly with my job so traveling the country was nothing to me, now I have to stay inside most of the time in order to juggle so I don't use up all my energy outside on pointless things like drinking or wandering around aimlessly.

    I have come to terms with the fact that if I want to juggle and get my life back together while I'm coming out of this that is what I have to do. My "Friends are annoyed that I no longer have the energy for them and treat me like I'm lying when I try to explain it to them.

    to me it looks like they think their needs and wants are more important than my health.

    I know there are benefits to culling the bad ones but that doesn't make it any easier.

    I think maybe my lifestyle has put me in a unique position because of the nature of it. The change has been very very drastic. Understanding how they feel doesn't make it any easier for me either.

    I had to deal with another case of this this morning which why I think I feel this way. I know it won't last and at the end of it all everything will be better, but sometimes I am weak and I let it get to me.

    Thanks for the positive vibes though, a bit of understanding is all I need.

  • I should probably mention that I am 29 and allot of my friends are all over the country and world, they haven't seen em at my worst so I really think they don't believe me on some level. Time to make more solid friends, just wish I had the energy for it.

  • I agree with Tilda. Sometimes it doesn't matter how many people we have around us - how many friends and family to offer a sympathetic ear. Unless they have it, they can't ever truly understand and so we can all feel very very lonely.

    Even though I've been ill for many many years, it wasn't until I joined this forum that I found people who understood exactly where I was coming from.

    You must take care of your health. Your body is fragile at the moment and you must do your best to protect it. You will always come across those who think they know better than you but just do what I used to do when I was a new mum. Only take the advice you feel is relevant and can help you. Other people, thank them politely for their suggestions but ignore their advice. If they take offence at that then they're truly not worth worrying about. Advice isn't something you HAVE to do. It's something you CAN do if you feel it will help you. And what will help one person won't necessarily help someone else.

    Good advice too about joining a 'physical' support group or enrol in something. Have a look on the noticebard in your rheumy department. They often advertise local groups. Or your local library.

    Keep strong. And we're all here with a sympathetic ear and a cyber hug when you need it.

    Bx

  • Cheers B :)

  • Hi there,

    it's not just the RA is it? It's the new you, very singleminded & determined by the sound of it and more aware of how precious time is. Obviously you've changed in response to the disease but some people might feel intimidated by that. Sounds to me like you were already getting a bit bored with your old lifestyle & maybe ready for change.

    It's soul-destroying losing friends but maybe, in the long term, not as bad as staying with a crowd you've outgrown & who might have been holding you back?

    Perhaps I'm reading too much into your words ... sorry if so.

    I'm much older than you but dealing with some similar things tho' nowhere near as extreme. A get-together with my husband's family floored me when it got to the point at which the drink and the conversation were going to flow most of the night ... I just could not participate. Thinking back it seems so trivial, but at the time I sloped off to bed feeling like an outcast. And I'm much more definite about how I spend my time than I used to be; ambitions that I've let slide now seem achievable because I'm so much more focused. I recall that when I was in my 20s my friends pulled me every which way & I wish I'd been more independent minded.

    I think you will make new friends who will be more in tune with you even if they don't understand the impact of RA straight away. But you probably know that and, as you say, it's bound to get to you sometimes. I'm full of admiration for the fact that you know what you want and are doing what you have to to achieve it & I'm sure that's one route to happiness even with the RA along for the ride.

    Good luck,

    Christina x

  • You have hit the nail on the head Christina, thankyou.

    I'll keep my eyes on the mission and not let it get to me.

  • The 60-second guide by RA Guy is very useful: rheumatoidarthritisguy.com/...

  • Hi again Su2po - hope I didn't sound as if I was criticising you for having an offload - I think this is the place to do it and I really do understand where you are coming from. But as Christina says you do, like many younger people with RA I've observed, sound as if you are more focused and a cut above many of the others you were meeting up with in your travels. My cousin is a performer and she and her partner run a traveling circus and she has recently found she has Lyme disease so I can see where you are coming from - although she is a lot older than you and has young kids too so a stability of a sort. But I honestly do think you will come out of it the richer for your focus and ambition. I know of others in the arts who have RA and I myself feel a much healthier more focused artist just now for struggling through adversity. This will make you more interesting to some people - and they will undoubtedly be the people you need so some good will come out of all this I'm sure.

    An old "friend" of ours gave me a rather drunken massage a year ago when my shoulder was very bad and he and his wife were round for dinner. He was insistant and I have to say it was quite nice - he did seem to know what he was doing and it didn't hurt more afterwards. But the next day he phoned me to say that he had felt his powers going into me and if I wanted to come over for more of the same he would be happy to oblige - I did feel much better didn't I? I prevaracated and wriggled out of this as best I could and vowed privately to avoid him like the plague. The other night he came into a pub where my husband and I were enjoying a quiet drink (non alcoholic for me!) and he was very drunk. He came up and got quite abusive to me about my response to his massage - which he said he knew had cured me - or had the potential to!? I just thought "what a total plonker!" and vowed to keep avoiding him where possible. These people do exist and they are like landing on the bum square in a game of snakes and ladders! I hope this makes you smile a bit. Good luck on staying focused and meeting some nice people along the way. Tilda x

  • Thanks greenflower :)

    @Tilda I didn't feel critisised at all, I was happy for your input. As for the "healer" guy. It is amazing the amount of people that have tried to "fix" me since I got sick and then got upset with a "if you're not willing to try it's your own fault you're sick" attitude. I think these people are leeches looking for someone they perceive as weaker to get their kicks off. you are totally right to avoid him, I think these people would keep you ill if they could just so they can keep getting whatever it is they get out of that transaction. *sigh* we all have our crosses to bare and it is really about putting it all into perspective, who to let into your life and who not to, it's shocking to find out who people really are sometimes.

  • Hello Su...I agree with the others about finding out who you are and who your real friends are and they are worth keeping. The members on here have been wonderful helping me through this roller coaster of pain and emotions. I have just gone through my mobile contact list and got rid of everyone who has not been in touch since I told them in May...or the stupid comments how 'it could be worse..blah blah' so looks like Christmas card list will be easy.

    Take care and hugs xxxx

  • "It could be worse..." "all you have to do is..." "have you tried (insert completely useless info here)"

    You're right of course, it just takes energy trying to explain to these people what is happening if they truly cared they'd make more of an effort to understand or at least ask some question instead of trying to give advice. sadly the ones that are left are too far away to be company to me. it's a lonely time but we all have those. I just ahve to keep going in the knowledge it has to get better, and it is, very slowly.

    Thanks for the pep talk guys :)

  • Hi, do not think you have any friends, you have loads! All of us on this site will be here to help, to encourage when you are up/down. I know its not the same as seeing us in person. The friends that truly matter stay with you and the ones that are not disappear as you have discovered.

    As to new found remedy's and potions do what is right for you and not what is right for that person, listen to your inner voice, it's always tells you truth.

    Take Care xx

  • Thanks Georje ,

    Things are really getting better for me physically I think that's why all of this is coming up for the first time in nearly two years I am able to deal with the emotional fallout of the situation and it's two years worth of it. aarg. luckily I am able to juggle again and that does wonders for my head.

  • Sorry to hear about your so called friends, It's hard enough to deal with physically as well as emotionally, life is full of people who say try this try that, I've had That myself too, it just stresses you out and makes it worse. Stay possotive in what you want to achieve, friends come and go, that's life, hope things pick up for you very soon. Paul. x

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