Things aren't always what they seem

I've had RA 10 years now, but only just joined this group as I feel lonely.

I don't feel that my friends understand. They try to include you, but going out clubbing is now my idea of hell. I used to love to dance, but can't anymore and it's torture. I look ok, good even, but that can add to the problems.

I live and work in London and use a walking stick to be able to get a seat on public transport. Without it nobody believes there is anything wrong with me. I used to sit on the floor of a train and then have to ask for help getting up - humiliating!

I'm lucky that I've kept my figure and I take pride in my appearance, but that just makes others perception that anything is wrong with you even more so. I have a wonderful husband who has stuck by me, which i am totally grateful for. I miss being able to wear heels and the some of the beautiful rings my husband has bought me thanks to my deformed hands and feet. I miss having girlfriends that are happy to just sit in a coffee shop or pub and chat.

Does anyone live in the London area? It would be good to have a support group that I could meet up with.

36 Replies

  • My post code is KT and the nearest line is South west to Waterloo, anywhere near you?

  • Hi Georje thanks for responding. I'm on the other side of London, SE area. Do you work in London?

  • No, I am retired, hopefully someone will respond nearer to you.

  • Hopefully. I can still talk to people online, which I am sure will help. Thank you

  • hi bigcatlover,

    Welcome to the site. Sorry to hear that you feel lonely. Everyone on here is really friendly and helpful and I hope that you find comfort here. We don't have any groups in SE London, the closest that we have is in Mile End. I have put a link to the info about this group on our website for you. There are no future dates for meetings currently but if you feel that this group was close enough to get to then you can keep an eye on the website for any future dates:

    We do also offer a telephone volunteer service where we can put you in touch with someone who also has RA. Sometimes it can be helpful just talking to someone who knows what you are going through. I have put a link to the section on our website about this:

    And you can always call the helpline to talk about things. Our number is:

    0800 298 7650 Monday- Friday 9.30am - 4.30pm

    Hope all this helps you bigcatlover.

    Best wishes

    Beverley (NRAS Helpline)

  • Thank you Beverley

  • Hats off to you being able to cope with public transport in London. I dont travel much at the moment but the last time I did a long train journey was to my father's funeral, with my daughter. We had a horrible time, trains breaking down etc etc and daughter intervened when there was nowhere to sit - she just announced to the carriage that I couldn't stand much and would some kind person offer me a seat. In the past I'd have been mortified but I was OK about that.

    Its horrible feeling lonely. I have met some lovely people through this site in my area (Edinburgh) but the wider community is so supportive. I hope you can get out and meet people who are a bit more considerate than the people you refer to.

  • Thank's Cathie and yes public transport in London is challenging. Sorry to hear about your father.

    It's not that the people I know aren't considerate it's just that they don't understand. I used to be a real party girl and was the first one up on the dance floor. This disease hasn't just changed me physically, but mentally too. I've lost some of my confidence and feel a lot more vulnerable. Crowded places make me nervous. I'm not as outgoing as I was. I miss the person I used to be, which is the hardest thing for me to accept.

    I look forward to speaking with people on here.

  • You're right about how this disease has changed us. I've become much more dependant on my husband over the past year because I can't go out on my own without help. We're still hoping that things can improve but time is going on...

    I have tried to think of positives - I have certainly worked out who are my real friends and who I can rely on - some very surprising things have come out. And I think I value things which give me pleasure.

  • Hi Cathie

    I know what you mean. I also have to rely on my husband a lot more and he's been great, but I hate the fact I'm not as independent as I used to be. I think the only thing that keeps me going is my stubborness. I refuse to let this disease win. I still work full time which is really difficult and I don't feel that I get enough recognition there for the extra effort I put in. I suppose it's not their fault they just don't understand how hard it is.

    You do find out who your real friends are pretty quickly when you get sick. I find going to hydrotherapy helps. I'm really lucky that I have a facility 10 minutes down the road with a heated spa pool, jacuzzi, steam room and sauna. I get to use it on Mon and Fri evenings for only £3.70.

    I love travelling, but have to save really hard as I can't travel in economy on long haul flights, which is another thing people that don't have a disability don't understand. They think 'oh she must be rich travelling in business class, not realising that I haven't been out anywhere or bought anything for 18 months so I can afford it. I've become a master at getting points for my food shopping and essential items that I can turn into airmiles to put towards the cost.

    When where you diagnosed? What do you find helps you?

  • I was diagnosed in 1999 in my 50s Was doing research at uni I carried on with this that involved travel to North Africa and France for about ten years. I got through the dmards quite quickly ten was one of the first people to go on biologics, infliximab + methotrexate. This worked for about ten years, but then my liver started to object, I developed a photo sensitivity and was taken off all ra meds by a stupid new doctor. She wanted to re diagnose me using ultrasound which involved a 12 week wait and a massive flare and depression. This Dr put me on a new biologic and the abandoned me, so when she moved the next appointment even further away I changed to a new Dr who is more businesslike. We still aren't out of the woods, I've just started ritiximab.

    What has helped. Where I live is in a ground floor tenement flat, no stairs, walk in shower etc. Ive adapted things to make life easier but still have to face a knee op. I get counselling and physio, which I pay for. Most of all its my partner who makes life bearable, but I still hang on to organisational things in my life.

    How about you? How do you manage your work and ra?

  • It took them a year to diagnose me as I started getting symptoms when I was 31. They wanted to put me on steroids which I point blank refused. It might sound crazy and irrational to most (I know the doctor thought so) but I was terrified of getting fat. I used to have some issues when I was a lot younger and I tried explaining to the doctor that I could deal with physical pain, but mental pain is a lot harder. It took me months to convince him, but he eventually realised how stubborn I was and that i wasn't going to back down. They put me on Methothrexate, but my liver said hell no and I had to stop that after a couple of months. They then put me on azathioprine, which helped for a good few years.

    A few years ago I was put on Humira, self injecting. I hated it and it hurt like hell. The first time I went to see the specialist nurse to show her the bruising the needle was leaving on my stomach was a horrible experience. Her response "well it's because you've got no fat on you". Yeah, she seriously said that. My response (I was angry) "well you've got too much and don't hate me because I can resist eating all the cream cakes and besides wouldn't having more fat on me put more pressure on my joints and therefore cause me more pain". She was speechless so I just left and decided to deal with it myself. I've built up scar tissue now so it doesn't hurt as much. I'm not actually sure it's even doing anything. I had to stop taking it in Nov to have surgery and haven't really noticed the difference. My hands feel a bit stiffer, but that could just be the cold. Who knows if these drugs actually work or if some of it is psychological.

    I'm really glad I joined this site, even if it does hurt my hands to type

  • I think you did right to avoid the steroids. I was on them for about six months and found them hard to come off. And I know from sharing the experience on here, that many people find the same.

    Its frustrating isn't it when your meds decide they dont agree with you. My misfortunes began when my liver objected to methotrexate. That wasnt helped by an inexperienced doctor who sort of abandoned me.

    I hope things are settled for you and you can get on with your life! XC

  • Hiya I love chatting on here as I felt do alone before I met my virtual friends who understand me. I think a telephone volunteer is good, mine is amazing !

  • Thanks Allanah

  • Hi BigCatLover,

    I can sympathise with your situation. As Cathie mentioned above, it's when your personal circumstances change that you truly find out who your good friends are. I likewise have had, what I believed to be good understanding friends, turn round and treat me like a fifth wheel holding them back and now see me as unwelcome. 'Fair weather friends' as I like to refer to them as, stick around when all is good and happy, but run a mile when things change which may affect them slightly.

    However, on the flip side, this disease has highlighted other people which are willing to bend over backwards and aid in any way possible to help improve things. Some people which I never even realised could be so caring and thoughtful have come through.

    I do find people make an immediate judgement on how you appear from the outside. The trouble being that outside of the people that suffer from it, so many people really don't seem to understand the consequences of the disease and what it means to be a sufferer.

    I found a couple of great booklets (I think was on the NRAS site) which were directed towards employers and 'other people'. It was perfect to try and help educate others around me as to what I could be going through and what they might expect back from me. The employers one was fantastic as my boss is not a person who believes in illness! He thinks take a couple of aspirin and all is cured. But it did highlight the condition through to our HR dept which are now a lot more receptive to my new requirements.

    I'm afraid I'm up near Cambridge so a bit far away. But I'm sure you find some great people close by.

    Stick with it and it'll all come together. :-)


  • Thanks Michael and what you say resonates. I will definitely look up those booklets, although my employers are 'all inclusive'! There are a few bad apples, but on the whole they are pretty good. I had a boss that was the same, didn't believe in illness, but luckily they have moved on and I have a much more understanding one now.

    Thanks for the advice.

  • Hi, no problem.

    Sounds like you were lucky your old boss moved on. I do find keeping up the daily routine in and out of work helps keep me sane. Even if it's agony trying to get round the building, it gives a good sense of purpose. I had to have 3 months off at the beginning of last year, and losing the routine meant it was really hard to get motivated for anything.

    But keep up your stubborness. It's an extremely powerful quality to keep pushing and driving forward in the face of adversity. :-)

    I like your comment above about resisting the cream cakes in reference to being a thin person. I had a similar comment made to me saying i was too thin what else do I expect? I need more fat to inject into.

    Unfortunately I did not think as quick as you and came out with some pathetic meek reply "Oh, that's just the way I am!"

  • Thanks Michael. I have always engaged my mouth before my brain sometimes I say things that others may take offensively, but that nurse did have it coming. I thought how dare she judge me when she is what the NHS consider clinically obese. I did walk out feeling very proud of myself and giggling like a little girl. The expression on her face still makes me smile today. Much better to be lighter as less pressure on the joints, especially the knees.

    I think I'd go crazy if I didn't work, plus the mortgage still needs paying!

    Take care

  • Teehee her reaction must have been a picture. :-) Hopefully she'll think twice in future before making some silly comment.

    As you say much better to be lighter and reduce the strain and pressure.

    When I was last at the Rheummy she suggested I put some weight on to aid the injections and give me something to inject. Thankfully I did point out "Won't that make my hips and knees worse?" Which she did concede to...

    Yes don't think the ole mortgage peeps would be too impressed. It does kind of add to the pressure of working... ;-)

    Plus it gives me an excuse to get the old car out and drive the couple of miles in. Otherwise it would probably rot away before my eyes and refuse to start.

    One thing I have found useful at work is finding out there are other sufferers in the building which are managing to control their RA and maintain their jobs very successfully. Gives a good sense of hope for the future seeing others coping so well.

  • Hi bigcatlover, I also live in London (central) and find travelling on public transport a nightmare. I try to travel off-peak because it's so rare to get a seat. I can relate to having to sit on the floor - I've done it too. In the beginning I didn't feel up to asking people for a seat plus it was too crowded. I've been having a break from work but am hoping to get back soon. I've turned the break into a positive & have been doing creative writing, painting etc as well as staying in touch with friends. Most friends are great but some people don't understand when I'm not up to staying out long or need to make plans at the last minute as things can change in terms of whether I feel up to it physically. It's a long time since I went to a club! I know what you mean about the psychological side. It's especially hard when it's mostly invisible. I've been asked to move when sitting in the disabled seat for example. Feel free to send me a PM if you want to chat.

  • Hey Francherry

    I'd love to chat, but not sure how to send a PM as very new to this. I too have received the most filthy looks when sitting in the disabled area. I'll try and figure out to send a pm

  • Hiya bigcatlover. Welcome to us here. Like Allanah I also appreciate this site to have someone who knows how it is for us to chat to. I think most of us will empathise with most you've mentioned on your first post, especially so for me the not being able to wear heels anymore lol! It's the greatest bugbear of mine with RD as I had quite a collection but never mind, I've transferred my passion to handbags so maybe you could find another passion to indulge in!

    Anyway, only just catching up & you've had some great replies, I hope you enjoy being here & learn lots as well as sharing lots. :)

  • Ha ha ha ha I now have a massive collection of handbags, much to my husband's annoyance. I really miss my heels I'm only 5 foot 2 inches and my husband is 6 foot 3 inches. Not being able to wear heels you can really notice the height difference. Being on here has already made a difference, everyone is so kind. It's great, which I'd done it years ago. Have a great weekend.

  • Ha! You're well ahead of me & similarly my h thought that was that but no!!! I'm pleased you're enjoying being here, it is a great support especially if you don't know anyone to natter with who understands just what it's like living with RD. Mostly my friends understand & know I can't stand too long so we find somewhere to sit, else I sit & it's not too long before I'm missed & joined. Truth be told I think some some are glad to sit down themselves & I'm there excuse lol! Even when reasonably well controlled it still affects what we can & can't do at times unfortunately. I hope you have a great weekend too. :)

  • Hello bigcatlover .. Like you I used to love clubbing and wearing high heels

    I still like to go but tend to go to more pubs where I can sit down !! If I do go out to bars I will have a dance in flat shoes !! But will pay for it next day !!! My friends have been understanding but lots of them are nurses like me !! I still work fulltime on a busy ward but by the time I get home I can barely walk !! Work keeps me sane !! I try and not let RA beat me but sometimes it gets me down ..I wish I lived near to you but I live in Bradford .. A support group would be good !! PM if you fancy a chat anytime :)

  • Thank you Izzymimi. Just being on here has helped. I chair dance a lot, lol!

  • Helllllooo! Just joined and read your post first due to your username containing the word 'cat', totally forgetting that the reason I am here is because of RA and not cats.

    Are you looking for an established support group or a few people to meet for a cup of tea and chat? I am yet to find a support group that is easy to get to so am thinking now that it might be better to seek a few random people that might like to meet sometime in a relatively convenient location for all concerned. Although I am based in Essex, most of my friends are in London so don't mind making the journey when I feel up to it.

    Not sure how to navigate around this site yet, but feel free to send me a PM if you want to chat (is that even a feature here? I do not know!)

    Oh, by the way, I am 28, diagnosed in 2013.

  • Hi Libramoon

    I guess you are a cat lover then? I live in SE London, but can get to Central London and Canary Wharf really easily. There doesn't seem to be any support groups in London, which is weird. We should start one!

    You can send PM on here, took me a while to figure it out. I'll send you one and you can reply.

    How are you? It can take a while to accept the diagnosis, especially when it comes at a young age. I'm here if you need to chat.


  • Heya BigCatLover!

    Yes yes, am indeed a cat fan! Not quite in crazy cat lady territory just yet though as I only live with two kitties as opposed to two hundred ;D

    The support group near me would take about two hours door-to-door due to it being an inconvenient public transport route. So I have just given it a miss so far. Canary Wharf is a pretty easy journey for me. And yes, we should start one! Are we even allowed to??

    I will reply to the rest through PM to test out that feature...

  • I know what you mean about the shoes....I invested in a pair of sparkly converse at Christmas and I tell you they are a talking point all my friends in heels think they're cool teamed them up with a dress from River island and danced it felt so good. Made me realise you can adapt and make a bit of fun out of it. I was diagnosed last year at 38 and have had a very up and down year but I feel great at the mo, tried some PMA figure if I'm going to live with it I need to handle it. Bought a juicer and live on fresh fruit and chicken/fish. As we all know if you feel as good as you can on the inside you can achieve anything on the outside! I have a very busy job and two children and am just getting back in the swing of loving life. The hardest thing for me has being controlled by something I like being in control....I just feel like I'm getting that back. Try and feel positive and adjust the things you did to suit your life. You can do it you sound like a strong person. Good luck xxxx

  • Thank you Sandiedc. I have been looking at sparkly espadrilles lately. Lisa Kay does nice ones and so do Toms so I think I am going to invest in a couple. I still miss my heels though, as I'm so short. I can relate to what you say about not being in control. I'd never thought about it like that before, but now you mention it I think that's one of the reasons I was so angry for a long time. I'm definitely more positive than I used to be. I think being negative makes you feel worse.

    Thanks for the support and good luck to you too.



  • Yes I agree but actually I think you need to wallow for a while as it's such a huge adjustment. Keep in touch


  • I did my wallowing 10 years ago when I was first diagnosed. I'm not wallowing at the moment I'm peed off at so called friends who make promises they don't keep. I think it's selfish to keep letting someone down.

  • Hey I totally know what your saying about friends I'm in West London if u need a chat I could do with a mate that understands xxxx

  • Hi Oxopinkyblue

    Send me a pm if you want to chat or meet for a drink.


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