Of the few friends I have in the small town where I live, I am losing friend after friend because of my RA and Fibro, It makes me angry at their ignorance and the fact that I feel if they really cared they would do some research on these illnesses before they Judge me or say What they think,
One of them told me today, that (a different friend I argued with last week), He seems to think i should, throw away all the pills, get rid of the walking stick, and just go to bed earlier and get up earlier, and get some fresh air is the answer for me) well My girl Friend tells me today well, He's only saying what were all thinking, i am shocked, because I am Ill I am losing friends, because in there mind, they all think I just like in bed all day taking pills, like eating Bon, Bon's, feeling sorry for myself, This is what my friends are saying, i am feeling sorry for myself, No I am Not, I am learning to Cope with something That hurts so bad on some days, exhausts me another, and Occasionally will allow me a pretty Okay day, i am hurt that people can be so cruel and judgmental of me because I am Ill, And they seem to think they know more than my doctors, and Me.
As some of u are aware I am trying to do research into getting a local support group together but this will take time, as I need to meet with various people to assist in getting things organized, So in the mean time, until something gets sorted, I am pretty much on my own, with a load of close minded and ignorant people, who dont care enough to do some research before they Judge, This is why I call theses illnesses Silent Disease, Because other than saying You look tired today, they think u r okay because u look it.
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LuckysJoy
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hi know how you feel and prob don,t suffer as much as you,but like you my friends tell me to sort myself out,go to a gym,be positive,meds are no good for you and you look ok all things i,ve heard in last few weeks from people who have no form of illness at all and all i say to them now is do u have any idea what i and hundreds of others have to go though every single day????they have no idea hun good luck xxx
Unfortunately it is times like this when we find out who are real friends are, Many of us on here have RA and Fibromyalgia so we know pretty much how you feel and what your going through, it is very difficult when your in pain and feeling down and the people who say they are your friends!! Just seem to disappear at the time you need them most. Have you thought about getting a few leaflets from FMA UK and from NRAS and maybe put them up in your local shop window, you might be surprised to learn that your not on your own because others in your town suffer also,
I run a Fibro group in Southport uk and it isn't easy all the time but you do make some good friends just as you do on here,a support group sounds a great idea, when I'm really feeling bad I get on the phone to the Samaritans and there I am able to say what I'm troubled with in confidence and I know they will do their best to understand what im going through and there even happened to be one who suffers the same.
I hope you know that you have good friends on here to, we are all going through the same chit day in day out, please don't feel alone as that's what we are all here for.
Thanks for writing, it did help to read your comments and words of support, It is just difficult when u live in a tiny town like this and now I feel a bit paranoid, that everyone is talking behind my back, I know sounds crazy I like the idea of getting some leaflets from FMA UK and from NRAS, thanks for that idea I am hoping to sort something soon, and hope to get together with some like minded people and hopefully make some new friends.
I've just read your reply to Philip and want to say very good luck to you. Take no notice and just remind yourself that while they are talking about you they're leaving some other person alone.
Good luck my live and keep trying to be cheerful. Not easy I know. Pam
Hi Sorry you're feeling so bad. I think sometimes people mean well but they just don't understand.
I have a friend in Newquay who is disabled (from a serious road accident a long time ago, not RA) and very up on disability issues/info etc. She also used to work for CAB in Cornwall many years ago so she might have some knowledge of groups - or even local connections. I could ask her.
Hello and thanks for your thoughts, I think that would be a lovely Idea if you could find something from your friend, that might be able to guide me in a positive direction in success of putting something together or finding something, Thanks.
Thanks so much everyone for reading my blog, I just did not know where else to turn, to hear something positive, I see My therapist once a week but its on Wednesdays, and this current comments started last Thurs, so I had to wait a whole week to see her, I will see her tomorrow, I like the idea of getting some leaflets from FMA UK and from NRAS, thanks for that idea, I live in St Ives, so the nearest group is in Plymouth so far,
Lisa,i'm coming to cornwall next month and we are staying in st. ives. We are staying at a fowlers site, so if you would like to meet me and my hubby i would be pleased to see you. When it is daylight i will try and find the address and message you when we are coming. I do know what you mean about friends,i've one friend who said she was going to come over last sunday to see me and she f/booked me to say she had fallen asleep and she would come this weekend. I don't hold out much hope of her coming round. She seems to forget i know what she's like so i don't get bothered when she fails to turn up.
It is at times like this that you find out who your true friends are. When you see your therapist in the morning, get her to find you some leaflets out with an idiots guide to ra/fibro and then give them to your friends and let them digest that. Also lisa, they will need you more than you need them my friend. The saying what goes around comes around suits them perfectly. If they were any friends at all they would have found out the information that would guide them on your disease.
I know we're on here,but this is the best support group you can get. I wish you well lisa and see what your therapist has to say today.
Sending you cyber hugs to make you smile. sylvi.xxxxx
What a lovely message, How wonderful it was to read as I was sitting in the bed having my morning coffee waiting for the puffiness to go down a bit, I can at least go through my day not feeling so angry at those people who claim to be friends, I would love to meet you and your husband, Fowlers is just outside of St Ives, I am sure you know the best way to come to town is the 17 bus, as the parking here is Nill. Please contact me closer to the time of your coming and I can give u my email address and my Phone num and you could text me and we could meet one day, That would Be fab, what irony is it, that someone who has not met me, and is not where I live, makes me feel more thought about, than anyone in this place where I live, Thank You so much for your Thoughts
My best friend lives in Bude, - i know its the other end of the county - but she has been fighting to keep together a resource centre for people with mental illnesses there. It might be interesting to get in touch with them - for their experience in working with the authorities in Cornwall to get things. They've stopped the centre from being closed down. Send me a message if you want.
Do you have any friends who might be ready to understand a bit about your illnesses? I have one or two good friends who also have invisible illnesses - one with clinical depression, another with a kidney transplant, another with a brain tumour - we're a right bunch. But at least we understand one another's limitations. I suspect that's something that becomes a bit easier with age. But if you're putting together a support group, it might be good to cast your net a bit wider than just RA - other chronic illnesses have similar issues.
And I so feel for you being in a small minded community.
Hello and thanks for your post, i do have one friend, who suffers from possible onset of seizures, and she is the only one who does come around, i think she is the only one who knows what the inside of my flat looks like, she sits on the bed at the bottom, and leans against the wall and we talk about peoples ignorance, She recently got into a new relationship, so this has been keeping her quite busy and I dont see her as much as I used to, But She still contacts me, and She understands, because people say she looks fine on the outside, which she does, as far as Support groups, I was thinking of covering, Ra, Fibro, ME or and od what I call The Silent Illness, Maybe I could call them the BLIND illnesses lol,
Thanks so much for your thoughts, And sending you positive Vibes back, from me to You.
Hi Lisa, you will learn you are better off without these people in time. I know my time is precious especially when and If I might feel reasonable, then I will spend that time with my family and close friends so I am glad I have been able to "weed" out my toxic friends. I think another name you could use for your'e group could be,, "but you don't look sick" LOL Best of luck with everything. We do care here as we can be ourselves, not be judged and know others understand as they are going thru the same poop, different day!
Hello there, Thanks for your comment, I really enjoy the support this group on here share with me, Helps keep me a bit Sane, I have no Family left, But you are right the bad apples are being weeded, I also Like that title, thought of that one too But the Naysayers of course will all be saying, Oh she's just doing this for attention, so I would prefer to not even let them know what i am doing, Just another thing for them to gossip about.
Hi Lisa, I have been poorly for almost 3 years, and 'friends' say they will phone or visit, but it doesn't happen. My family are the ones I know really care,and do what they say. My daughters are great, words can't discribe how good they are. I agree with the comments that the others have said, the suggestion for getting leaflets and distributing them is good. I think 1 of the first places to put them would be on the Doctors notice board. I wish you well in your project, show what you're made of. Hope you are able to meet Sylvie,that would be a breath of fresh air for you. Take care Parkie xx
Lisa dear, I am just furious for you, that you had to be subjected to so much ignorance!
Alot of the ignorance and misunderstanding comes from the General Population not being informed!!
It happened to me, while I was working in a hospital lab, with the same techs I had worked with for 17 years, and any time I just could not go into work, they just rolled their eyes and made sarcastic comments (relayed to me by my true friends who felt I should know who the negative ones were)
With the suggestion of the nearby Pharmacist who commented there sure were alot of people taking MTX since we got a Rheumatologist in town. Soo we talked and I thought, maybe these peop[le would like to talk too.
So. I sent a little paragraph to the local newspaper, asking if anybody taking MTX or other anti-rheumatic drugs, would be interested in getting together. Left my phone number.
The Phone rang off the hook for days! So. I contacted theArthritis Foundation (in USA) you could contact the NRAS, told them what I wanted to do and they offered to supply all the pamphlets, books etc. to be distributed at the meetings. Where to have the meetings? likely the hospital where I worked.
So, talked to the Administrater, who referred me to the Marketing Rep. They agreed to let us use a portion of the cafeteria one evening a month, it could be closed off from the rest of the cafeteria.
Then, I put another notice in the paper, the Arthritis/Fibromyalgia/auto-immune support group would meet the following weds at 7 pm at the hospital cafeteria.
I was blown away by the attendance. I decided to include all the chronic, auto-immune arthritises , Lupus, Sjogrens, etc. as the problems and the treatments were very much the same. That was in Oct., 1996. We are still going strong. I invite a speaker for each meeting, from one of the many specialties that treat these people. PT<OT< Pharmacist, Rheumatologist, Podiatrist, Orthopaedic surgeons, Dieticians, some of the many. Also have had patients who had joint replacements come and give information on how it is now, etc. The crowd always has questions. Many Fibromyalgia patients attend, so it's good to get a Rheumy or Pharmacist to talk about how to treat them.
Good luck!! If you really want to do this, I will help all I can. loret xxx
in reply to
Probably best to call the group what it is"Arthritis and other auto-immune diseases Support Group" lest people might not know what it is and not show up.
After being established for several months, I had business cards made up with the group name on the top, meeting date and time and on the back is printed "for patients and family members and significant others, to learn and understand. Education is the key to Rehabilitation"
in reply to
Distributed these to some of the Dr.s most likely to encounter these patients. So, GPs, Rheumys, Ortho surgeons, Physio
I will also be seeing the community support lady next month at my GP office, she assists in finding ways for you to cope with various aspects of your life, I think she may be a Wonderful person to bring this up to as she will have many connections to various Higher ups in the Council and various other communities.
How inspiring your story was to read, I am so happy for you that you were able to take the steps you did and have the success you have, I have been taking notes and suggestions, and also I have someone who has a business checking on Network Cornwall, also I have had offers of a room for small group to raise awareness as a starter, and it could grow from there, It is all early days, But it has given me inspiration to help myself, and also the other people who suffer in silence and feel like they have no where to go, Hopefully i can help someone as well.
Thanks for you're sharing your story, every one of them are inspirational to me, and I really feel people here do care.
Thank You ever so Much for your thoughts, i see u are a fellow late nighter lol X I think I will try to Lie down for now, I hope you wake feeling well tomorrow , as well as Muself Have a good night and Thanks again ((hugs))
Close! I am in Northern Ohio, Bellevue, a little town of 9,000, just 16 miles south of Sandusky and Cedar Point. Bet you know where that is !! Small world, isn't it?!
in reply to
Even though, college sports-wise, Michigan and Ohio hate each other! Narrowed down to Michigan State Ujiversity Football and Ohio State University Football!
((Hugs)) back to you, I bet you are enjoying the warm weather there, I miss The Massive thunderstorms the most, You know the ones with wonderful cracking through the clouds and the deep rumble of thunder, and the light shows, Wow, How Awesome Dont get those here in St Ives, I am all the way pretty much the south west corner of England, and where I live particularly, We have our own little eco climate, we have cold (nothing like Mich/Ohio cold Winters, But we have flowers and Palm trees all year round.
Definitely is, I lived 34 miles north of Ohio border off of I75 x
This endeavor gave me a new life, a new purpose. I could make something good and positive and useful out of the pain and disability and heartache. Sharing with others is its own reward. Loretxx
I am finding this to be so true, I dont feel so lost and alone now, although I am still going to work on getting some meetings organized this will give me a purpose, as if I dont have one, because I cant work, This will make me happy to accomplish something, that will also Help others, as well as Myself x
Today I did see my councellor/therapist , this was the first time since the two people who started their crap last week as it happened on a Thurs, and I dont see her until Wed. Hence me writing the blog, we talked about various things and I told her again about how much wonderful support I get when I write a blog or ask a question, and how comfortable and supported by people I have never met, and Feel that everyones words are Genuine . I am looking forward to something positive, Also I am looking forward to meeting Sylvie as well. I was thinking today re leaflets, i think (yes they would be used for the right reason) the first 2 of them would be handed to the most closed minded of my so called friends, And tell them, when You care to understand me, let me know, Until then, Leave me alone. I know in my heart I am better off without them, The negative energy just drains me more, AS IF I need additional help in that, lol. I will keep you updated. Thanks all for your comments, suggestions and Help, You have helped me get through this week a little Stronger, And you have been a big part of that.
Hi Lucky if you look at my blogs you will see a website called therheumatoidarthritisguy.com this guy has written a 60 second guide about RA. It is perfect to email to our ignorant friends.It is very tactfully done with an input of humour. I know it is very hurtful when our so called friends let us down. take care (((lucky)) Ladybird47 x
Hello There, Yes i am aware of this site, and It is quite humorous as well, i think I will Print a few of these off and next time I hear a comment, I will gladly hand out copies, thanks for reminding me X
Hi Lisa, sorry to hear you are having such a bad time of the RA and also 'so called friends'.
Sorry you've lost your cat. Having lost dogs I know what loosing a pet feels like.
About 18 months ago we went and got a rescue dog. It had taken us 7 years before we could accept another dog after the previous one died (she had been so perfect). Now we wonder why we waited so long, I feel now that getting another dog is a tribute to our previous dog. If she hadn't been so good we wouldn't have wanted another one (even if it did take us 7 years).
I wonder if you have thought about getting another cat (or cats)? Of course it wont be the same as your previous one, they all have their own personalities as do dogs. Maybe it's too soon for you - only you know that - but it may be a step in the right direction and give you something to be more positive about and you wouldn't feel so alone.
Rescue centres are always looking for good homes for abandoned cats (or kittens) and as you had your cat for so long I reckon yours would be a very good home.
Thanks for your thoughts and your story, It is really early days, and I had promised Lucky I would never get another cat baby, as I feel i would resent it (as it is not her) and it would be unfair to not give the babies all the love and affection I gave to her, We were a family for 22 years, she read my emotions like a book and I hers, She was an indoor cat, so our lives were so intertwined, It is early days and only been about 6 weeks since she passed, I still mourn and light her candle by her ashes, so DeI believe at this time, another cat baby is out of the question, I am sure u understand, if it took you so long.
hi lisa , sorry to hear your having a horrible time at the moment, but your in the right place, everyone on here is lovely, and try to help the best they can, i hope things improve for you soon, take care, sue x
Thanks so Much for your lovely words and thoughts, I know now where to come and It does help to read the response to my blog, and also to read other stories and then I really know I am not alone
Lisa xx
Dear Lisa,
I am sorry you are having such a bad time. it is horrid, I have my own chair/. computer terminal at work some of my colleagues at work were only making snide comments today about oh some people get their own and dont have to share. I had mine provided due to genuine health needs( like i might need to sit as I get tired and feet hurt etc. yes I look normal but we all know how this disease can affect us!
I greatly admire your strength in thinking of setting up a support group.
Thank You so much, but You must know it is scary, I well telling my therapist only yesterday, If those Naysayers see me do something, Like post leaflets or get a group together or try etc.. This will give them more ammo to start the Oh Look she is doing this for attention, to get more people feel sorry for her, I explained this to my therapist and she said, Lisa, They dont matter, You are conversing with new friends on your website you visit and getting support, They (the so called friends) someday will realize the mistake they have made and find it is too late as you have moved on, and They will have lost a special friend in You, so be brave and do for yourself and others (if it helps them) what you need to do with your chin Up.
And it is with the support of people on here that keep the dream alive x
I have asked my friend in Cornwall. She's away this weekend but will do some checking and she will also ask another friend of hers, who I also know, in St Just.
Been feeling very down myself recently - and that's having had 2 weeks out of work for a break! Been looking to see if there are any local groups here re arthritis or glaucoma if not my rare Fuchs eye disease. You'd think that hospitals would help with this more wouldn't you - even if it means people arranging their own venue. I think there is an arthritis group up here but I got the impression it wasn't very frequent.
Anyway - hope it's warmer down there than up here. Freezing at the mo. Had the heating on all day and it hasn't stopped raining!
Hello Sorry to hear you are down today, I hope it is better tomorrow for you, Where about are you, We had a crap day today only 15 and drizzle then rain, worst part about the weather is i feel the change every time the pressure is changing and it affects both the RA and The Fibro, Drives me mad. I myself had to stop work, as I was running myself into the ground and paying for it physically, because the last thing I wanted to do was receive disability, But I will tell You It has been a Blessing, A Gift, It has given me time to Start to treat myself, and Take the focus off every thing else, and Finally focus on me, Which we HAVE to do some time, I am glad I listened to my therapist/councellor as she was right, and the way my body is at the moment, I am NOOO good to Anyone Good luck, and if you hear anything about meetings down this way let me know please. Take Care Lisa ((Hugs)) Hope that helps
Very sorry to hear about your experience with your "so called" friends. Despite how much it hurts to be neglected, or ignored, or even worse, criticised by people we trusted, I often think that the silver lining in adversity can really be this unique opportunity to see your "friends" true colours shinning through. If there are no bad times to go through, we may never discover their true nature. And after you find out their true nature, would you still want o be close friends with someone who is not caring, understanding, compassionate and loyal? What for? Friendship is always a give and take process. If all they want to do is take with no giving, why would you want to keep being there and give all the time? I think you put it down marvellously: if they want to make the effort to at least try to understand, the friendship might survive, only empty judgement out of ignorance is definitely something you don't need right now (or ever for that matter!).
I was watching this BBC program the other day about three different painful health conditions. One of them was Ostheoarthritis (not really the same as ours, but I guess similar enough in terms of pain, mobility problems and disability). To illustrate the condition, with constant pain and stiffness, one of the two medical presenters was put into a reinforced body suit emulating the constriction of movements and excruciating pain. It also delivered random electric shocks for greater accuracy. The guy was in agony.
I remember thinking with a touch of malevolence how badly I wished that my boss, my handful of "so called friends" who now need a new label in my vocabulary, and even my very patronising R A consultant had to spend a week wearing one of those suits!
I am very lucky, through my own very bad patch, I know know that most of my friends are solid gold. And like true friends, they are prepared to weather the storm with me. They don't get upset when I have to cancel things, which right now is unfortunately very often. But I have also been very surprised to find out that some of my most cherished friends have been "hothouse" friends. I was terribly upset about it, angry and hurt. Now I am more pragmatic, and almost thankful for the experience. If they hadn't let me down so badly "in my time of need" I would never have discovered that they were not really worth my time when I'm well. Energy when I'm well is now such a precious commodity, almost as precious as gold and jewels. I definitely don't want to waste it with anyone not worthy of my friendship.
Best wishes for your group. It is a very brave and generous thing of you to thinking of doing. I hope you meet a lot more people worthy of your time, your energy and your kindness.
Teresa
PS. The NRAS Helpline has done a lot more for my recovery and my mental health than my RA consultant!
I know its hard but go around them when you feel bad I go to work no matter how I feel and they can all tell when I hurt. I work in a dry cleaners pressing shirts so I am around heated machines which helps with the pain so after about a half hour I start to loosen up. They say you have to keep moving so it helps that the machines are so hot otherwise I might not make it at work some days. But I will say I have a good boss when it comes to being sick his attitude is if your sick your sick go home and you don't have to go to the doctors to get a note.
Your note made me cry. I am so lucky to have lots of caring friends that do their best to understand. Mostly I get on with a normal life. I can mostly bear what goes on inside so probably people don’t realise what’s really going on. I try to not go on about it. Occasionally of course I have to miss some sort of event because I’m not up to it. Times like that they all get concerned.
I suggest that you choose some of your “real friends” and send them a brief lighthearted note with some excerpts from websites outlining RA symptoms and the consequences of stopping medication. How ridiculous! Ignorant! Anyway, they obviously don’t get it. Maybe tell them you understand that they must feel frustrated because you look ok. I think you get my drift. It would be a shame to lose friends because of ignorance, a lack of understanding. Also be aware that they will never completely get it. EVER!. I’m sure with a positive attitude you will resolve your differences and have a good outcome. I think you’re at a low ebb at the moment. We all go there sometimes. It will pass. The flares pass as does the fatigue. We know it’s coming back but each day at a time. Keep yer chin up. 🌼
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((Hugs)) back 
I know it is very hurtful when our so called friends let us down. take care (((lucky)) Ladybird47 x
I want a new body! Stat!!!
I want my independence!
How do I get my parents to understand RA? 
