Am I being too sensitive? I was diagnosed sero posive just over a year ago and although initially people seemed sympathetic and said all the right things, I have found now that, they all seem to think that I should be over it now and don’t want to know.
The first reaction from my mother when I told her that I had RA and had just had my first steroid injection was, “you’re not going to get a big fat backside are you?”!, I haven’t bothered mentioning anything to her again, until today when I told her that I had to come off methotrexate because it had given me a skin viral infection similar to chickenpox. She raised her eyes to my sister, totally ignored what I said and changed the subject.
Having just spent an hour driving to visit them (if I want to see anyone I have to do the driving), I picked up my stuff and left.
I have been through hell this last year, I live on my own and have to do everything myself, I don’t need to explain the pain or challenges on a daily basis to any of you because you already know what is involved. However, at times when I try to speak to anyone, I feel that I am completely shut down. I know that I can go to professionals and groups etc., but the hurt I feel when my own family are so uncaring is almost worse than the physical pain of RA. Giving them leaflets etc., wouldn’t help, I just know they would not take them seriously.
I feel so alone, and that the only way to avoid this sort of emotional hurt is to cut them out completely and accept that I have to deal with this on my own.
Sorry for such a depressing first time contact, but I would appreciate any views or similar experiences and how to deal with the fact that I don’t have supportive friends or family.
Lulu
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renv0ize
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Yours is a very common problem facing a lot of us with ANY disease that isn't easily seen by our family and friends. I know first hand exactly what you are going through, and it is unbelievably difficult. But even after 9 years... I have yet to figure out how to educate others so they really understand and believe our pain... or how to just accept their judgement, and make it "ok" within me. Keep trying to educate, inform and share with them whatever's comfortable for you. And then... do your best to let go of what you can't change, and focus on taking good care of you Good luck!
Lulu, i am so sad for you,i am sending you cyber hugs your way. |It is bloody hard when you don't have a family to support you. My sister lives in n. ireland and she has some idea of what i'm going through as she has health issues of her own. My brother well what can i say about him. He has health issues of his own,but he completly ignores my health. Its not that he is hard-hearted. He was the much wanted son and was spoilt by us all,he doesn'y see the pain i'm in.
What i'm trying to say is limit your visits to when they suit you and only go when you feel well enough. Also tell them they if they want to see you they will have to get off their backsides and come over to you. If they won't make the effort then it will be their loss. Don't lose contact with them, just do what they do and don't make the effort.
It is very hard when your own,as i don't know where you live so i can't offer any advice on what is available in your area. I will suggest you see what is available at your drs surgery.
You have a family on here with us all. You can message me anytime you like. I don't go very far these days. Bedworth is as far as i go on my own now.
It's very hard to explain to people who don't have this what it's really like. I don't live near my family although I can't say they're not sympathetic. My in-laws, who live very close is another matter altogether. My sister-in-law lives opposite me (don't ask - not my idea) and when I've been laid up after hip replacements etc she doesn't come near nor by. My parents-in-law will come running to her when she snaps her fingers, but never do they come and see how I am.
It's very hurtful but something you just have to accept. It's almost as if people hear the word 'arthritis' and they switch off as "everyone gets a touch eventually". I agree with Sylvi. Don't cut them off they are your family after all - but do limit your visits. You don't need the added stress.
One thing most of us are guilty of I think is putting on a brave face. We do it because we don't want to be thought of as a moaning minnie but the flip side of that is that those close to us don't see the real pain and suffering, because we never let them.
The same goes for me. Message me anytime you just need a sympathetic ear. We, more than anyone else in this world, know exactly how you're feeling....
Have a gentle hug....it is terrible when people that you love and would hope would support you through these tough times let you down. People don't understand which I found very hurtful..as they always 'yes I have that' so ended up not mentioning things to people. The best comment from on GP when I was feeling ill was..you look healthy to me !! and he is a professional. Take time to think and look after yourself...and let them come to see you. Take care x
That is such a sad story lulu, i really feel for you my workmates and employers have the same attitude and that makes me angry i think this evil agonizing disease is met with so much cynicism its disgusting and when you're own family toss their eyes its just so cruel the people on here are great at geeing you up and trying to generate a positive attitude i know this is little solice but solice it is,i even meet genuine concern with cynicism it ain't just the joints this thing destroys x
Oh my goodness, I thought I was the only one with an unsympathetic family who don't visit and colleagues who think I'm 'at it'! Thanks for your honesty, this is pain you don't need in addition to this horrible disease.
My own tactic with my family has been to stop putting on the brave face to telling them absolutely everything...whether they ask or not, and whatever their attitude! I tell them about my appointments, treatment, pain, difficulties, and that I have no idea what the future holds. They've started asking more questions, which usually reveal their ignorance of the disease, and I answer honestly. It's not been easy, my mum still tuts when she hears something she doesn't like or she questions what I say, but funnily enough this has the effect of being a sounding board and gives me questions to take to my doctors. At the same time, I make sure I ask more about their lives. This is all on the phone, they're too far away for me to drive to.
I've done a similar thing at work, not hiding my pain or difficulty (but also not exaggerating it) and answering questions when they come up and it's also helped.
Meeting loaded questions as if they're simple questions takes the power out them - if people say I look healthy I say thankyou; if they say they know how I feel because their knee hurts, I sympathise with their pain and it depends who they are whether I say anything about my own.
This tactic came during a crisis by looking at the problem and finding something I could change; your tactic may be completely different and come from a different angle.
Have you seen the RA Warrior blog? She has a huge amount stuff which you might find useful. There's also a section of replies to the annoying questions called '20 replies to things not to say to a rheumatoid patient' rawarrior.com/20-replies-to...
There are some great responses to your blog, I hope you can see that there are people here who can come alongside you with understanding; and I hope you're able to add your family to this number soon x
I feel your pain, both kinds. My mother accused me of putting it on initially and then told me it was my attitude that gave it to me, I don't talk to her anymore. The conclusion I have come to is that in order for people to try and understand what you are going through they have to empathise and that means feeling the emotional pain that you are feeling, some people are just too selfish to feel bad when they don't have to. I don't have any family support either and had to go through it all alone which only made my friends think i was making it up because surely if I were that sick I would be staying with my family. Life is hard and this disease makes it harder but it made me take the positive step of removing those negative and draining people from my life. It's not easy I am still alone but at least I'm alone and still have my energy to deal with what I need to. I am so sorry you are going through that too, but don't take any crap from them and don't let them demean your experience. it is a bloody hard thing you are going through and if they can't understand that then they don't deserve you energy, hopefully they will come around soon.
I obviously can't see your family but they seem unsympathetic.I sometimes wonder if people who have never had severe pain really cannot understand what it's like having it all the time,
Or they are afraid of being overwhelmed by their feelings of sadness etc
But being treated like this makes it even tougher......
JUST BECAUSE PEOPLE CANT SEE IT AND HOW YOU FEEL THEY DONT REALISE I HAVE HAD THE SAME OF SOME PEOPLE WHO DONT KNOW WHAT YOU ARE GOING THROUGH I COULD NOT MANAGE BOUT ME WIFE TO HELP WITH COOKING ETC SHE KEEPS EVERYTHING GOING
IS A BIT LIKE ELECTRICITY YOU CANT SEE IT ONLY WHEN IT HITS YOU
PEOPLE THINK YOU ARE WALKING OK BUT THE PAIN WHILE YA DOING IT
I HAVE EVERY ADMIRATION FOR YOU MANAGING ON YOUR OWN
BUT ITS GOOD TO HAVE A MOAN AND GET IT OUT OF YOUR SYSTEM
I don't think you're being too sensitive as it really does hurt when people make no effort to understand what we're dealing with. But you're also right in recognising that you've got to find a way to manage this as otherwise it'll get to you more and more. I have one sister who is equally useless - and she's a doctor! What I've done with her is to limit my contact to times when I'm feeling strong enough to be able to see/talk to her without mentioning RA. I tried getting through to her, especially as I thought she would be really helpful in understanding what was going on, but it really didn't work and made me more stressed as I somehow felt I can't have been explaining right. It would be lovely if family members lived up to expectations, but all too often I think that's just a dream or something from story books. So I've tried to stop hoping. Instead I try to find other routes, including this site as well as friends and diversionary activities? Have you tried doing things like writing an RA diary to offload all the negativity ( and then burning it, or something equally symbolic!). it's sad, but try to find other ways to get support. Take care. Pollyx
I had a bit of this from my Mum when I first started having problems, and I kept letting it go, but there's only so long that you can listen to someone telling you that they're in pain too, so you can't keep going on about it, and you need to stop 'lazing around', before you snap. Which I did! She's a good 'un, though, and it genuinely hadn't occurred to her that I could be experiencing more than she could imagine herself. So I gave her a bit of information, and spoke to her about it, and she appreciates what I'm going through now.
Good luck, Lulu, and remember that this kind of illness sometimes serves to show us who we can truly rely on.
Sara xx
Hi there,
I'm well aware of this syndrome & it depresses me, too. I have a very supportive husband but the inability of some friends and family members to simply 'get it' is very strange. I read a blog or comment by Tilda in which she recommended telling people that you have to take a drug that is used for chemotherapy so I tried that a couple of times and it seemed to get the point across. Then I tried it on a certain family member & her response was "well, at least you won't get cancer."
Perhaps I'm having a sense of humour failure.
However, despite my first-hand experience of how useless people can be, I think I almost understand what's going on. Diseases like RA show few outward signs compared to how much suffering goes on 'inside' & for some that just does not compute.
This is a long shot, especially as it looks like you live an hour away from your mother, but could you use reverse psychology and get her more involved? How would she respond if you asked her to attend a hospital appointment with you? She'd be part of it all & the penny might drop.
I am so sorry you are feeling like this and on your own. I had everything that all the others have said , friends not understanding and me missing out on lunch dates and them not understanding why. My family were better as a lot of us have it but they live a long way from me.
I telephoned the NRAS helpline when I was down and in pain and I can honestly say they were wonderful. They did understand and helped me cope with the "why dont others get it." I hate the "arthritis" word as it really doesnt described the illness for me. I also got my own volunteer that i am meeting in September to chat to, someone who has the illness and my point of view and I am really looking forward to meeting her, she WILL know and I think that will help me. So if you feel that will help give the helpline a ring. Hope that helps you as much as it did me.
Thank you, thank you, thank you all for this wonderful support. The most revealing fact is that I'm not the only one and this is something we all have to deal with in one way or the other. I feel so much more positive now and am going to stop yearning for support from family that clearly is not going to materialise and start seeking out more energising company. I live in Hertfordshire, so there are plenty of things I could get involved with and will definately take the advice of minismising family contact.
I worked as a lecturer up until last year, so was very much a problem solver and do find it very difficult to be the one needing help rather than giving it.
I am more that willing to listen to anyone who needs an ear, so please email if you need support.
Lulu x
Hi Lulu - sorry to come late to this discussion - your cry for help really deserved these responses because it's one we all have made at some point or other in the RA journey I'm sure. I don't know if my parents would have been supportive or sympathetic because both died suddenly and out of the blue a few years ago - I'm sure this precipitated my RA actually.
I think my mum would have been sympathetic and very supportive up to a point but that would have run out - and my dad was quite preoccupied by his own health conditions (diabetes 2 and arythmia, gout and high blood pressure) so he probably wouldn't have liked having to share the limelight with me much!
I did get quite up front with one of my younger sisters (both are profoundly deaf) because I needed someone other than my husband to understand what I was going through a few months ago. I gave her NRAS link and also RA Warrior and told her that I've always been very supportive of both my sisters re deafness from birth - and get the latest info via several hearing loss charities too. So I asked her if she could do the same back for me and she and her boyfriend and children all looked it up for me and she is now far more on board. The older sister is like my dad and feels she's the one who gets things wrong with her so she remains steadfastly ignorant and says things like "lucky you not to be deaf AND have RA!" and so on which drives me nuts but that's just her and I do love her so I will just have to accept that it's better not to mention it much to her!
Friends are another matter and after the first burst of sympathy or ignorance most don't mention it now or if they do I just tell it to them as it is as briefly as I can i.e "it's crap today i'm in pain but hopefully things will be better tomorrow" or "things are great just now thanks for asking!". This way I don't have to lecture them and frighten them off but can be honest.
Those that give me nothing get nothing back and are no longer friends but that's no loss to me! Good luck and come here a lot - we can all cheer you up whenever you need it. Tilda xxx
Totally know how you feel, my sisters first comment was 'everybody has that'! My mum is very supportive, but has made mention of the weight gain around steroids, which is true.
Some people say the psychology of mothers & daughters is related to the mother seeing the daughter as a reflection of herself! Hence the grooming of hair and the 'your not wearing that' and 'well you could d o better' sadly, I am as guilty as the n.ext mum of all that ..
I will just say asi am only in from hospital and hubby jst told me to rest :(. You may discover that for instance your ' work friends' were indeed just that.
A so called good work friend texted me the other day to see was my operation (last October!) a success? Bit late don't you think? I'm on to my other ankle now! She is defo out of my life the bi...
A culling of so called friends is sometimes required for RA sufferers as we have to eliminate stress. The friends and family that truly love you will bother finding out what this disease means and it's impact.
Having said that you are still you, and your condition does not define you. Instead of calling it rheumatoid arthritis,try saying my inflammatory disease or my autoimmune disorder, maybe will generate some understanding. It's a big issue the name,as it was used to describe every ache and pain in the past.
families are not so easy to Cull, but I did cull one sister and her brat of a daughter for three years, as they gave me so much stress over my mum, and not helping when I was unwell etc etc. this did work for me although I am a natural 'bridge builder 'in my family psych babble, I am only now very recently back in any sort of a sisterly rlationship with her.
The very best thing you could do with mum & sis, is to have stayed, and waited quietly for about 20 minutes, ntil they asked you what was wrong, and then as calmly as possible describe your' feeling' when the eye rolling or the fat ass comment was made. For example. Yeah there is something wrong, I feel very hurt that you are making these comments, if it was you had IA, and had to take steroids to keep going, I would hope that your ass getting fat wouldn't be my priority, I would hope it would be to see you improving! also, I am upset & worried enough about this diagnosis, and it makes it even harder, to see the two of you trivialising it, I really thought I could count on you. End by saying maybe you should educate yourselves as to what RA IA autoimmune disorders are all about! Never walk out honey, when you have said your piece listen to their side, and then say well maybe we should all have a long think about this, and maybe talk again soon. Nice cuppa tea ma and change subject.
I hope this makes a bit of sense, I did have a general anaesthetic today, so could be raving.
Pm me nytime, ihavesome been thru all that you describe and m now dare I say it my own person, and even better and more contented.
I'd regards, Gina
Apologies for typos never buy an iPad. I type faster than it!
My wife has RA and I have recently suffered a stroke (last week), the third one. Family and friends have their lives and frequently, particularly around holidays forget others unintentionally or say and do "stupid" things. Fortunately it doesn't really mean they love us any less. It is particularly difficult to focus on that at times like you are having, however. We sometimes just have to "give each other time and space" and help each other remember why we love and admire each other and what the other person is particularly good at and makes them and others happy. We help each other find reading material together at the bookstore and discuss selections. Since I play several musical instruments and draw sometimes I just like the solitude they provide or I can spend hours listening to music which helps me "re-focus". My wife quilts and reads incessantly and finds peace there and in playing card and word games online, watching great old movies, etc.
There isn't a "one size fits all" when it comes to how to deal with pain. I have definitely had some depression at times until I realize that is what it is and get among good friends and get the focus off of myself and onto others and their needs.
My wife just "has to work through it" by herself at times and I have to watch and know when to "give her space and support" by taking over the cooking, cleaning, etc. during those times. These online support groups are wonderful as you can access them 24-7 and don't just use the ones for your group...use others as well like for strokes/heart attacks/cancer/shingles, etc. to help shift focus and get sound advice. Find the one that works best for you and "run with it".
Sincerely hope this helps you Lulu.
We all love you, pray for you and wish you Godspeed!
Hi Lulu, I count myself very lucky,my family are all very good, my Mum doesn't seem to understand the amount of pain, we sufferers, suffer. I've given her leaflets, talked to her time and time again, but she still doesn't understand (she's 80). I can't imagine what you're going through,we are here to help you if we can, for you to let off steam etc. Take care Ann xx
Hello,
I'm sorry I have come so late to this conversation but just wanted to say how sorry I am that you feel so alone at the moment.
If it is any consolation, I had a similar experience with many of my family members who didn't understand how difficult life had become with RA (I live alone also). Recently, however, they seem to have come around and have become very supportive so take heart, things may change. In the meantime just know that there is a community here who totally understands you.
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Good luck!
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Am I silly to start methotrexate?
