Some thoughts - a new type of courage is required for RA?

Some thoughts - a new type of courage is required for RA?

Following a few blogs on here by newbies to the world of RA - and also because a friend's young son is struggling with probable AS and is putting up many manly faces of bravado she tells me - I've been thinking about the nature of courage.

My mum always had a big thing about being courageous, and when I lost each of my parents, both suddenly and both at the age of 73 - I had to recite her notions out loud to myself like a sort of mantra so I could keep going for me and for my two younger sisters and all the grandkids and devoted friends etc. I had to hold big funerals for both (my mum was stuck in Ecuador when my dad drowned while on holiday with her) and had to organise them so that my sisters could understand everything (interpreters) and it was quite a rigmarole doing all this and clearing her house a thousand miles away from my home and family.

So coming to terms with having RA has been hard because I've had to do it without my mum in the background telling me to be brave and pushing me to confront doctors simultaneously. And like many on here I've been tempted to just underplay it all in the hope that I won't have to suffer the humiliation of not being believed or thought a hypochondriac by my doctors - and also in the hope that if I don't acknowledge it then it will just go away. Basically there have been times when I've been a real wimp on this journey! The thing that's emboldened me most has been having this site and also having great role models in two fearless campaigners for parents.

And I've been lucky to have a good GP who believed this was RA from the outset and who referred me straight away, lucky to have suspicious blood results that showed something was up, lucky to have a great husband and kids and supportive friends. I don't take any of these for granted now. I know some on here don't have these to give them a head start and I'm very sympathetic to others so much worse off than me in all these areas and those who have more aggressive RA than I do.

The point at which we recognise that this isn't going to go away varies tremendously of course and depends on how severe the disease is for us and how high our pain thresholds are and how we deal with coming to terms with something like RA. This is especially tough when so many people don't know what it is or what having it entails and when the drugs we have to take are potentially so toxic and have horrible side-effects and when many of us get so little contact with our specialist rheumatology team.

But I did just want to say this for people who are even newer to RA than I am - and especially for those who are still in limbo awaiting diagnosis; there really is no place for false courage with this disease. By this I mean putting on a brave face, pretending all is well when it patently isn't and playing it down to friends, family and worst of all to doctors. There just isn't time to mess about with RA - and the doctors haven't the time, energy or inclination to read between the lines and decipher whether we are actually fine when we say we are.

So here's my advice from what I've learned to date; courage is telling people what is wrong if they ask (without boring them to death - it's a balancing act of course!) - and it is also being as frank as possible with the medical profession even if we risk being thought hypochondriacs or malingerers - which is horrible and does happen all the time. It's hard to do this for ourselves, so much easier to stick up for loved ones etc. But if, like me, you no longer have parents to push you and cajole you then you just have to be a parent to yourself and spit it out as it is for the doctors and nurses to make sense of as best they can. And if you're not getting the treatment you need and deserve then take courage and fight for it with all your might - it's your life, your body and you don't want to end up in unnecessary pain and deformities just because you thought it would all just happen as a matter of course. These are straightened times and we have to fight our corner hard and sometimes even fight dirty because there are so many other equally valid and much more visible claimants all around us.

36 Replies

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  • Toche` We all have to be RA warriors in our own right!

    Some teams are very supportive and push forward at all times, others you have to convince, but what ever sort of team you have, you have to be the advocate of your own treament. I would add 1 thing - research the disease for yourself so that you are informed - & don't leave it all to your rheumy team - be a postive contributor as its predominately you living with dease!!! Besides there is always time contraints - so use your time wisely.

    Well done T :)

    Olympic beckons Jx

  • Well said Tilda, you have showed your courage, I am sure your parents would be so proud of you.

    We are all warriors in our own way.

    xx Gina.

  • I know, my family is the same. When my parents refer to it, if at all, it is called my aches an pains. My two brothers refuse to acknowledge my RA at all. I am currently off DMARDS as my liver cannot tolerate MTX or sulphasalazine but I haven't bothered to tell them as it would be of no interest. However, in September, I am going on a narrow boat holiday with them so perhaps the penny will drop. Meanwhile I will keep calm and carry on!

    Carole x

  • GreenFlower those who love you don't always want to know because they do really get the sense that this is something big and they are scared. My sisters are both like this too. I don't know how my parents would have reacted but I think my mum had related stuff going on with her joints looking back - she used to call it her "rheumatism" and sometimes had very swollen joints and trouble moving about even though she was slim and looked after herself very well.

    My dad and grandad had diabetes 2 and also suffered from gout. You can turn this diabetes around for yourself by losing a lot of weight and keep it at bay if it's caught early enough - or you can avoid getting it at all if you exercise and don't eat too much. But you can't stall or stop inflammatory arthritis through lifestyle factors. When I was told by my GP that the bloods had come back positive for RA I asked about diabetes and he tested me for it. My blood sugar was high so I had the bigger glucose index test and fortunately it came back clear. I told my GP that I would feel so angry with myself if I landed diabetes 2 because I've always known it was on the cards as I'm physically very like my dad. So I've lost almost 4 stone in 15 months and I am certain I won't get the family disease of diabetes ever. I wish I could have staved off RA in the same way but it's not possible - although keeping fit and eating very carefully does help a lot with the load bearing joints I've found.

    I don't know what to say about your family but they will be secretly shocked and in denial too I'm sure. Give it time. Tilda x

  • gREENFLOWER, gO BACK. tELL THEM YOU SENSED THAT THEY DID NOT QUITE UNDERSTAND WHAT YOU WERE TRYING TO TELL THEM, AND THEN REITERATE THE SYMPTOMS. iT'S JUST LIKE tILDA AND sCIQUEEN SAID, YOU HAVE TO MAKE YOURSELF KNOWN TO YOUR CONSULTANT, LIKE LEAVE NO STONE UNTURNED, PUT IT ALL OUT THERE ON THE TABLE. tHEN, iF THAT DOESN'T ENCOURAGE THEM TO ASK QUESTIONS, YOU COULD POINT OUT THE JOB SITUATION, HOW THIS DISEASE AFFECTS EVERY THING YOU DO, OR TRY TO DO, OR WANT TO DO. eVERYTHING. iT WEAKENS YOU. sEEMS PARENTS CAN RELATE TO THAT TERM MORE THAN OTHERS. wEAKEN, BECAUSE, BELIEVE ME, THEY KNOW WHAT WEAKEN FEELS LIKE AT THEIR AGE. omg< i just looked up and see my caps lock must have gotten clicked> would you mind if I don"t retype this? It's just so important for your future relationships to have them on your page. Tell them you really need them to go through this with you, to understand what you are dealing with. Assure them it is not a life-threatening disease, but it is a life sentence. There is no cure. Possible to go into remission and have few symptoms, but always with the possibility of it resurrecting at any time. Also will be imperative that you have the drugs as perscribed, for a lifetime.

    I honestly had very similar reaction from my Mom many years ago, when I first told them the reason I had to have the first lumbar spine surgery. When I explain I had arthritis and it was attacking my spine, my Mom said, "oh well, everybody gets that eventually. They used to call it lumbago. Ok I let it go at that, and it just kept eating at me. So, one of the next trips back home I started the conversation again. It got better.

    I surely hope it gets better for you also, especially with parents, but also with close friends. Loretxxx

  • Yes my mum used to complain about lumbago too. Maybe she and dad would have been the same way about it - they certainly would have gone on about my weight being the cause and that would have been the priority still.

    Just to say GreenFlower that it's kind of early days for you to be assuming this is sero negative RA. There are other possibilities so maybe just focus on telling them how bad you've been feeling and how much you'd appreciate their support. Even when you do see a rheumatologist he or she may say its inconclusive at this stage so keep an open mind as my rheumy tells me to do. There are other forms of arthritis such as SLR that can make your hands bad in the same way and don't rule out osteoarthritis either it can affect the hands and wrists as well. Tilda x

  • I agree we are all warriors of varying sorts Gina. I just want to dispel this myth that courage is being stoical and pretending to be coping when actually the world is crumbling underneath us.

    You and others on this site have encouraged me to come to terms with having RA. Because of this support I've been far more proactive about seeking help and getting onto the right drugs and complaining about being abandoned for a while. Others who are stuck on long waiting lists or who have been abandoned on insufficient medication must also find the strength to do this too because the window of opportunity is not great with this disease and it's too important to rely only on others for as Sci has said. I don't mean to make out I'm especially brave because I'm not but I have been lucky and want to share some of the luck I've landed with others here. TTx

  • I loved your blog.... you are inspirationalx. Your parents would be more than proud of you. You write with such excellent diplomatic explanations, of how lifes losses and challenges have influences have affected you.

    Your information is always concise and easy to understand. I appreciate that fact you take time to share this with us.

    I think I have still been in the denial stage, having been on metho tablets, then having stopped them for 6weeks. I am now well aware of the flare up I am now having. I was hoping she doctors had miss diagnosed me, but alas not. The pain I am now suffering are the same as I started with last sept. Treatment started in march and was effective despite side effects. Now due to start metho injections next week.

    I explained to my GP that being diagnosed with RA was actually more difficult for me than being diagnosed with breast CA.

    Reason being that RA the focus of treatment needs to be jumping several hurdles each with it own side effect.

    Similar to breast CA but with the latter an end result you can maintain focus.

    RA is so unpredictable that it can leave you completely non functional overnight.

    Also, you can look well and feel rotten so therefore people can treat you with disdain.

    Employers recognise CA but a lot of employers find it difficult to empathise or recognise RA despite it being a recognised disability.

    Good luck to all you brave fellow suffers.

    A painful way to be united, but

    So glad to have like minded friends

    Carole

  • Thanks Watson - you and many others on here give me inspiration too so it works both ways. I'm interested in what you say about the relative trials of RA and breast cancer. I think the main difference must be that at least with cancer - although it has the potential to kill it also has a pretty high chance of cure/ recovery. As my rheumy pointed out yesterday to me - arthritis is for life.

    Also it just simply doesn't drop jaws or elicit sympathy as it would if you said "i have cancer". Not that we always want to make people's draw drop but it is galling when so much money and focus goes into cancer awareness that arthritis's of all types are so misunderstood. As someone on MTX - who struggles with it at the moment - I think if people knew that we had to take a chemotherapy drug for many years, possibly for life they would get a shock.

    One of our practice nurses is also an old friend and whenever I go to her for MTX blood monitoring sometimes she says that she is more scared of having RA than of cancer - and she has also has breast cancer and a mastectomy. Her mother in law has RA and is crippled and in terrible pain with it and she has seen what it can do to people if not caught in time or too severe to respond to treatments. There is so much educating to be done with RA isn't there? It's a good job we are all fearless warriors here eh! Tilda xx

  • If you re read the latter half of my blog having suffered from both conditions that was hopw and why I was able to make the comparison from 1st handed experience..

  • I understood that Watson - its interesting hearing it from someone like you who has suffered from both though. What a lot to cope with. I read somewhere that BC is also an autimmune disease like RA- others on this forum site have suffered from both too i know. Tilda x

  • I Am like you sure they are both closely interlinked. Also sure they are Also associated changes with hormonal levels.

    I am sure I am starting to menopause which could be associated with the RA symptoms.

    My GP said I should quote how this disease affected me, and point out to my employers when I in for my meeting on Monday. Employment review regarding ill health and absenteeism.

    Would and interesting to see what verbal response it made

    Will let you know

    Keep up the good fight

    Carole :-)

  • Excellent dissertation up there, Tilda! I know I have recognized this before, you are very adept at putting thoughts together and making it an easy read.

    Also the recent new picture is lovely, so I'm going to risk swelling your head and tell you, tonight, you are a package deal! :) L.xxx

  • Wow thanks Loret - a package deal me?! Ho ho good job you can't see or be me today - I'm full of cold, throat ablaze - sick as a dog me. But you are one of the people on here who keep me right so if you say so I'll take your word for it.

    The photo was taken by my uncle - now sadly under the affects of advanced altsheimers - of me as a kid sitting on a statue of a sphinx in Chiswick park ear where I grew up in London. It seemed appropriate with all this talk of my parents and all - me astride a mythical creature - a good metaphor perhaps?! Tilda x

  • Well said tilda,now all we have to do is tell the world about our pilght(excuse spelling) You have hit the nail right on the head with your blog. With cancer they can see the disease at work,RA you can't see anything,except people walking differntly.

    You are brilliant with your words tilda well done. love sylvi.xx

  • Well said also, Sylvi! There is an active campaign over here, with the National Arthritis Foundation, who sends representatives to our Government in Washington, DC, constantly appealing for more recognition, appeals to Drug companies to try to lower prices on these exotic drugs.

    On the local level, most all city govertnments have some council or committee responsible for making sure all public places are handicap accessible, not only for mobility impaired, but also for legally blind--ie intersection curb cuts level with the street and color coded, for those using walking aids.

    But, so much more can be done, to make the public more aware of the actual living issues that arthritis sufferers have to deal with daily, and the lack of recognition and understanding of their disabilities, in the work force, and personal associations.

    Which is why I write the monthly column for the local newspaper, usually citing one topic and the current drugs used, and other treatment recommendations.

    Also conduct the monthly meetings of the Arthritis/Fibromyalgia Education and Support Group. An often lively source for discussion amongst the attendees. These groups are sponsored by the Arthritis Foundation, and leaders take a training course to begin. Been doing this for 16 years.

    Years ago I also spoke to the Senior Centers, in the nearby area, but now that I can no longer drive, I can't do that.

    We have several very eloquent, well spoken writers here, if someone would like to do such a thing, like write a monthly "blog" for your local newspaper, you can work from home, at your own schedule, no pay, just the assurance you might make a difference! L xx

  • I think many cancers are also invisible Sylvi but your get your drift. I think it has a lot to do with very basic fear and cancer inspires that fear even though many are treatable these days. RA should inspire as much if not more fear it seems to me - it represents a life time of pain etc and can sometimes go for the organs and requires us totake shi**y drugs for the rest of our lives. So does Crohns, so does Lupus and MS mind you and yet none of them seem to get people as scared as the big C word. I think this is about very good funding and excellent publicity that the big cancer charities generate. Arthritis Care, Research and NRAS are all doing brilliant jobs of course but the word arthritis still stigmatises these diseases as only affecting the elderly. Although being elderly with RA must really suck too of course. Tilda x

  • Hi Tilda. Well said. I agree with everything you've said. Unfortunately I'm one of the ones who tried to conceal my illness from my family and that is why, probably, I don't get the sympathy from my children. My son asks me how things are going periodically, but my daughter rarely asks how I am mainly I think because she's scared of having a semi disabled Mum. My father died some time ago and my mother who's now 98 (living in a care home) never really understood about RA. She, like so many others of a certain age told me it was rheumatism and to but plenty of Deep Heat. Oh, if only it were that simple!!

    Anyway, enough of me. Thanks for your thoughts and comments in your blogs, which sometimes reassure me so much.

    Carolyn x

  • Thank you Tilda for an inspirational blog - you are so right in what you say. Deep down I am really frightened about what RA may be doing to me and I worry about all the drugs that I take and the effects they are having on my body. To look at me, you would see nothing wrong and I do find that people are unaware and uneducated about RA and just assume you have "a bit of arthritis".

    I will endeavour to follow your advice - so thank you!

    Mags x

  • Thanks Carolyn. I wrote this blog on impulse because I was getting emails from this friend about her young son and getting a bit sick of the idea that he's so brave to not speak about his problems to his mum ever and that playing it all down to everyone including doctors is somehow courageous? Its driving her nuts that he's shutting her and others out.

    Personally I believe it takes more guts to acknowledge it and try to educate people about what it means to have RA. Depression is such an issue with this disease and I'm sure that's partly because it's so little understood. If more people knew what having it involved then it would be a less isolating experience for each of us. This site helps hugely of course but really we need to know that the people we rely on for everyday communication - i.e colleagues, family and friends - also realise what we are having to come to terms with too. Tilda x

  • Amen again!!

  • Great blog Tilda :-)

    Paula x

  • Thank-you! TTxx

  • Great blog Tilda, I am newly diagnosed and admit I have been in denial which I now see is a mistake. Best to be up front with everyone so that they know why sometimes days are bad uns and time I thought about myself for a change and to stop trying to pretend all is well. Fortunately my diagnose was only for mild RA and I'm really hoping the mtx will help but from what I can gather from being on here, it seems to take a while to find the right medication. So many inspirational people here, makes me feel very humble x

  • Ps we all go into a bit of denial I think - who wouldn't? It's just how long the denial lasts that's the issue as it can hold us up from getting the most effective treatment.

  • I know me too re the humbling experience of being on here. I think I'm mild too although it never feels that way when we are flaring or taking these drugs does it? The MTX has been a wonder drug for me in terms of RA although it took three or four months or so to work properly and the introduction of a second DMARD, Hydroxichloraquine seems to have helped me too. Anyway a warm welcome from me to you Ellabelle. Tilda xx

  • Tilda that was a great blog and give me a lot to think about as i spent the weekend being stolical and silly as opposed to being brave. feel a blog coming on.

  • Please be brave Mads - you owe it to yourself and your girls you know. Stoical does not equate to brave. Fighting for your right to good health does! Tx

  • Fantastic blog and comments everyone, a real insight into how some of us feel at different stages of this disease and so eloquently written.

    Judy xx

  • we all find differrent ways of dealing with things. I played down all the problems I was having, still do and have to catch myself. I didn't want to worry my loved ones, I wanted to protect them. but, apparently I wasn't fooling many. I remember visiting my mum & dad and mum kept offerring me different favourites to eat. I kept saying "no thanks, I'm fine" [I couldn't if I tried], I felt so ill. I caught a look on her face of how worried she was. She then said she would have some toast, would I like some. I determined that I would eat one piece even if it killed me! and asked could I have half a slice. I wanted to give hr a hug and started to follow her into the kitchen. she didn't see me. She ran into my Dad's arms and said "Paddy! she's having toast!" her voice was very happy but tearful. Theyhugged. It meant so much to be able to help and I thought I was protecting them. that was the most precious piece of toast ever and I've never forgotten it or the importance of accepting help. I'm still very moved even now 18 years later and both sadly gone. regards, sandra

  • Ah that's a moving story Sandra. It's hard when both parents are gone isn't it and I remember when I was diagnosed last year thinking "I'm glad they never had to know or they would have both been really worried about me the whole time" - so now I can only speculate on how they would have reacted.

    I think it worries me when people say that they keep a brave face for their doctors most because we know how busy these HCPs are and in this current climate, with all the cutbacks in the NHS, doctors will take patients at face value and not maybe scratch around for the truth as they once would have.

    I also think that here in the far north of Scotland people set a lot of store by stoicism - but there's a big distinction from burdening people with your problems and being honest about symptoms of a disease such as RA. If we tell people we are fine then increasingly I think they will choose to believe us and we can't blame anyone but ourselves for this.

    I try not to talk much about what's going on with my health to my boys but actually increasingly I find that they like to know as they worry about me less if I'm straight with them. I think it's more scary if they see me in pain or sick and often very tired, and they aren't quite sure what it all means. Also it just means they can tell their friends why I'm hobbling or wearing splints and then a few more people will know about RA which can only be good. Sometimes it takes more courage to be open than to keep shtum. TTx

  • Hello all. I've just picked up this thread and been moved by all that has been said. I've been in denial for 3 years thinking it would just go away despite being on Mtx (horrible side effects) then self help with diet, vitamins etc. then Sulfasalazine (mouth ulcers, rash and itching like a mangy cat) and now waiting for the next step and wondering if the cure is worse than the disease. My lightbulb moment hit me struggling down the stairs this morning that this is not going to go away - this is me now - and being stoical (my regular comment "I'm okay") is just not true. I am not okay.

  • Are you on anything now? Sorry about light bulb moment I had one on Tuesday too and that's me much better just now. Got to the point after 3rd bug in a month (now on antibiotics) where I really thought RA was preferable to killing my previously strong immune system but now I'm recovering from latest horror cold (more like a bad flu) and dropped down a dose of MTX so not feeling sick hooray hooray I'm thinking okay maybe we'll manage this bu**er yet!

    It's swings and round abouts followed by a rollercoaster ride and then back to snakes and ladders isn't it? Never a dull moment really. TTx

  • Thanks, Tilda. My GP is speaking to my rheumatologist today. They have been great but I'm not sure if they will prescribe another DMARD or try something else. I understand I may have to try one more and fail on that before they look at anti tnf drugs but it all just seems to be taking a long long time with no alleviation of symptoms. The best bit so far has been weekly visits to the local hydrotherapy pool - bliss!

    Fi x

  • Ooh I envy you that at least Fi! It is all terribly slow in rheumatology isn't it? I guess we have to just hope that the RA is moving slowly too. TTx

  • Yep, so true. On the good days I'm positive, upbeat, but the bad days... I'm sure you know what they are like! Still no word back from dr/rheumy so just getting on with it. Hope you're having a good day.

    Fi x

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