Tilda’s magnificent blog on courage has made me contemplate the long term implications of our diagnosis and the emotional stages we, as people with RA, go through to reach that ‘level of acceptance’ which is often spoken about as a goal in times of adversary.
I am not convinced that any of us truly reach acceptance and to be honest, I don't believe that acceptance is something we should aspire to . There are two reasons for this belief. The first is that I feel confident that, given a choice, not one of us would opt to keep this disease. It would, therefore, be more accurate to say that we should aim for a level of tolerance rather than acceptance. RA is not something we would wish to keep but fellow bloggers here have shown that all of us strive to establish ways to tolerate our condition in order to lessen the impact it has on us.
Secondly, reaching a level of acceptance implies an acknowledgement that nothing else can be done and that our condition is our lot in life. Thankfully this is not the case. Yes, remains true that, at the moment, it is incurable but In the 12 years I have had my diagnosis there has been significant advances in treatment. There are endless reports of the huge benefit of Anti-TNF meds and campaigners remain active in their attempts to ensure the earliest possible diagnosis and treatment with these expensive but effective drugs. Hopefully research will continue but only if driven by a non-acceptance of this disease.
I agree wholeheartedly with Tilda’s sentiments that the courage we need as a group is not that of stoicism but that of having the determination to communicate our need for change and to speak out to our GP’s and Rheumy team when things are not good. Who knows what is around the corner in the development of treatments, we are the ones that need to drive that forward by asking for reviews and by refusing to accept that nothing can be done.
Having said that, I am aware that many, if not all, of us are profoundly affected by this condition and that we have to find a balance of tolerance so that our daily lives do not become of battlefield of emotions.
It seems to me that there are several stages that we appear to have in common and which are more related to our emotional state than our physical condition. Briefly, they are;
Denial followed by Overcompensation and then Confidence and Understanding leading to Tolerance. This blog would be way too long if I gave details of how I view each stage but establishing Tolerance gives us boundaries of what we can and can't do that we recognise and acknowledge. It allows us to adjust our personal goals in life and to actively take control in the attainment of those goals. Thus reaching that rare but happy state of pride in our achievements rather than regret at what we have lost.
Unfortunately this disease all too often moves the goal posts as it progresses and we find ourselves re-starting the emotional cycle again and again as we struggle to establish a new 'norm'
It is well documented that depression often goes hand-in-hand with RA and yet it is largely left to us as individuals to find ways of dealing with the emotional effects of the disease. It would be interesting to know how many of us reached this site by our own initiative and how many were made aware of it by health professionals as an aid towards dealing with our condition. Tilda's latest blogs are a window to our collective mixed emotions and a reminder that many of us have other hardships in life to deal with which are made all the more difficult by this unpredictable disease.
Given the evidence of the link between our physical and emotional health I would suggest that access to resources to nurture our mental wellbeing should be mandatory and fought for as strongly as the medical treatments.
We have access to any number of drugs on the NHS, their use is justified by carefully measured and calculated tests. We have had discussions on this forum about our own contribution to these measures where we rate our feelings on a scale of 1:10. Many of us find it difficult to rate ourselves, particularly for general wellness. I, personally, feel that I want to rate well. The Anti-TNF has a definite positive impact on my physical condition and the last thing I want is for someone to look at my self assessment and conclude that I am not benefiting from it enough to continue with the treatment. However, I always hesitate over the general wellbeing assessment because frankly I feel rubbish when I am not in the Tolerance stage.
I sometimes wonder whether these ratings would be easier to give if non-medical treatment specifically targeted for that area were also available on prescription. Imagine - massage, aromatherapy, Tai Chi, group meetings, food allowances, the list could be endless but very, very effective. An allowance for emotional nurturing on the DLA would do it but sadly, the likelihood of this happening is slight unless it becomes a valued form of intervention! How misguided is it to acknowledge the stress effect but not treat it? Perhaps one day the medical and alternative worlds will be able to work side to side.
In the meantime, we continue to do the best we can. We can have determination, resilience, persistence, empathy, sympathy, compassion, anger, despair and tolerance but never, never acceptance. Non-acceptance is what keeps us strong.
Well said great blog, food for thought. I really felt I was at the acceptance stage, purely as there is no cure, yet, only treatment to hopefully slw the progression. Then, how do they determine if the progress is indeed slowed, many differ in their opinions.
I for one am now tolerating it! Free massage, good foods, I'm all for that lol.
You blog was absolutely fantastic. It's content excellent and reached out to all aspects of RA. It was a pleasure to read, and So well written.
You have much to offer so please accept my thanks for giving me so much hope. It was truly humbling to read. Having the ability to write with such honest expression is a gift in itself.
Also to offer insight and empathy. Along side research principles and outcomes shows a very good professional understanding of the condition.
Elizabeth Kubler-Ross wrote a book on Death and Dying.
I read this as a student nurse 35years ago.
Your blog had the same profound effect, I have learnt so much from your blog, as I did from this book so many years ago
Many thanks my friend.
Carole
I have just had a hand massage from my daughter, after reading her you blog. I do not think I will ever reach the tolerant stage. I am very proactive and non compliant, so things will need to be very debilitating before I could contemplate laying down to the effects of this horrible and unpredictable condition.
Massage,Reiki all fantastic complementary therapies to be enjoyed....unfortunately not on the NHS.
Ditto to your response Carole. Creaky's blog touched every nerve for me and so reassuring that I'm not the only one to suffer the emotional side of RA badly. Over the last 18 months since my diagnosis, the attitude of my medics has more or less been to 'pull myself together'. They just do not get it! The impact of this vile disease affects every aspect of your life and also the people around you! x
Yout blog has stated quite rightly how this disease affects us. My mantra has always been not to give in to the ruddy thing and despite being in a flare that has floored me i still follow that mantra. I believe that the day i give into it is the day i die and that is not coming anytime soon.
Hello..What a great letter...I am a newby as only diagnosed in May and already have had a scary rollercoaster ride of emotions and pain. Tilda has been amazing as have others with support and where to turn to when having problems. I am lucky that my Rheumy nurse is brilliant and gets things done at my GP surgery. After a major tantrum of 'why me' which is not really like me to be feeling so sorry for myself.it turned to anger and especially when people didn't understand I might look alright but feel dreadful. As I said before..for such a 'common' disease I had never heard of it until I was diagnosed myself. I plan to return to my Guide Dog puppy walking that I have done for 3 years by January. Take care and hugs xxx
Well said Creaky, I totally agree on not accepting and will always fight, it's in my nature to do so. I only gave up work as something had to go, I could not do both work and have a life, I chose life. Luckily I worked in the public sector so could take my works pension, very reduced, non the less some income, my husband although retired works on average eleven days per month. On his non working days we have been able to get out and I have actually started to do the household shopping, with his assistance, something that I could not do whilst at work.
Our minds are the one thing that nobody can actually help us with, it has to come from within. But what helps is being able to talk to other people who are experiencing what you are going through and their understanding of what you are feeling on a day to day basis. I feel for all those people in the past who did not have access to computers and these pages, they were so isolated. Us we have this site and blogs to help us, and reading about our good and bad times, so let us all praise this site and share it with all the people we know, just in case there is someone silently sitting at home who has yet to discover us. I certainly wished I had known about these pages a couple of years ago, when I was at the 'why me' stage and not the 'well, why not you are you that special'. Well, yes I am 'that special', I am unique as we all are, and special to be able to be in this group. Without this chronic illness, I would not be in this club and not read all the trials and tribulations that we all go through and the adversity that we overcome, which in turn makes us stronger people.
Loved reading your blog, it expressed so much of what I have been thinking and feeling recently and put it into words so beautifully. I had been thinking a bit about Kubler Ross's stages and wondering when/if I would reach acceptance, but you are right, acceptance is not quite right for this disease - now tolerance is to be my goal. Heard a quote the other day, whilst watching the proms - something like "without suffering there is no struggle, without struggle no victory" (apparently Beethoven's mother) - thought this quite appropriate for RA - hopefully we can all achieve our own victory one day.
I think you've hit the nail on the head here, really. I've only had this pain for 10 months, but - much as I have felt like crying with it on occasions - it has never brought me to tears. The realisation, though, that I am not fit to do something that used to be easy - now that has made me cry several times.
Unfortunately, as someone who has suffered with mental health issues even before the onset of symptoms, I have to say that the NHS provision for common MH complaints like anxiety and depression is generally fairly poor in my area - I'm not sure how it is elsewhere. I was offered a 30-minute telephone consultation with someone, who would give me 'self-help tips and direct me to websites' - good grief, don't they think I'd done that myself? Luckily, I was referred for CBT via Occy Health, and I had started to get the pain by then, so the psychologist was able to help me with CBT for that, too. But the NHS process was so arduous for so little gain.
It's an aspect of the condition that the medics overlook so frequently, but we need to raise awareness that all chronic conditions - especially those accompanied by pain - take a huge toll on our mental health as well as the physical.
Sara xx
Well done Creaky - more food for thought - my brain aches now too! Sorry to come in on the back of this a bit (esp when you've nodded at me publicly!) but I was out all day and then came home and went straight to sleep. High price, lack of pacing and all that blah! I will slowly get my head round all your ideas but they sound spot on. I couldn't accept any of this if I tried. Tilda xxx
I've read more thoroughly now my energy's back (after good long sleep - no wonder I don't sleep at night any more eh?!). I think it's an excellent blog and agree with everything you say - thanks for this Creaky.
I'm a bit inclined towards "if you get lemons make lemonade" school of thought so resist any tendencies towards being diagnosed with MH probs personally. This is from having grown up with family members who suffered from severe depression which led to an assumption that my being a balding (alopecia), eczema covered child was all due to my being of a neurotic disposition. So I'm of the "I'm fine" brigade in relation to this I'm afraid to admit- because I always want to prove this assumption wrong. To be fair I'm quite emotionally robust on the whole so hate the thought of people using any excuse to dismiss me.
I actually got very cross when my GP tried to make me think that I was suffering from depression relating to coming to terms with RA - and wrote him quite a frank letter explaining why I didn't think this was the case. I was infuriated that he didn't seem to believe me when I said that I was sure my bouts of depression related to the MTX - and gave me a cognitive therapy site to look at. As it happened I'd already tried a much better one than the one he gave me called Moodscope (recommend to anyone here who thinks they need one).
But that said I think all the GPs in my surgery are very approachable about mental health stuff and if I ever did feel that life was slipping out of my control to the point where I couldn't cope I am sure all three of them would take this on board. My consultant wrote to my GP saying he thought bouts of depression went with active disease which makes a lot of sense to me - I don't think that's quite what my GP was saying though.
I know that others here aren't as lucky with their gps and I agree that the best thing of all would be if some of these complimentary therapies were available on prescription. Oily fish and prescription library books are available up here on prescription but there is no counseling service - but maybe that's to do with it being such a small place that anonimity is a bit issue - or maybe there is one really but I've never been told about it. There are lots of complimentary therapies available and I go to tai chi for a fiver for 2 hour sessions so I think I'm actually pretty spoilled compared to many of you. If my rheumy's point about depression being linked to disease activity was more widely acknowledged by General Practitioners I think we'd be heading in a more positive direction at least. Tilda x
I've been mulling over your blog and I'm not sure I do entirely agree.....maybe it's just semantics but thought I'd pop it down anyway. I think there's a difference between society not accepting the impact that chronic diseases have on populations as a whole and the economic output and so on, and whether or not you personally accept having the disease. So it remains important that research continues, as this affects a good chunk of people ( and not just old ones!). But on a personal level I felt it was important that I reach a level of acceptance. Not sure I'm quite there yet, but in the early stages I was really trying to fight having this and not coming to terms with it at all. And that made things worse. However, since I've accepted tht RA is part of my life, I've tried to work with it not against it. And so it has become much less of an issue. So for example, I used to try to cover up the fact that I couldn't do as much and would try to keep up with friends, and ended up having to spend the next day in bed. So I started to avoid these sorts of situations and ended up not going out as much. Now I'm much better at still going out, but saying "sorry, have to sit down for 5 mins", and then carrying on later. So yes, I accept that I have this disease, but I still won't tolerate it wrecking my life...... Pollyx
I was diagnosed more than a decade ago (finally!) and will be 54 next month. My medical history shows I've had RA since my 20s. All the docs wanted was to put me on anti-depressants because they couldn't get a proper diagnosis. Now, I willingly take Cymbalta for physical pain. I've been on many of the drugs and began Actemra infusions as soon as it was approved by U.S. Food and Drug Administration. As you know, one drug is not enough.
Alternative therapies provide more relief than many prescriptions. I'm lucky to have a massage therapist from Belgium here in Texas. He helped me walked without devices and works diligently to get knotted muscles back in place. I tease my husband when walking out the door: "I have a date with Mr. Kiss." That's his name.
I'm getting Botox in the neck and all over the head to alleviate so many headaches. It's not perfect but a big relief. I'm looking for a good acupuncterist (sp?) to provide some relief and I try to waddle in the water as much as possible
You are right on about alternative therapies. I wish you all could have access.
Emotionally and physically, I hit a new low when my best friend drowned in her bath tub in June. I've spent the summer dealing with the fallout and comforting others (she was my son's God Mother and my husband's friend from birth. She introduced us 25 years ago).
But neglecting myself put my health in a tailspin and I have to crawl out of the hole again. Flares put me in a mental fog and I fell down a flight of stairs last week. A fractured ankle and scrambled brains but my neck is intact. A sense of humor is necessary!
Many hugs to all of you (but I won't squish too hard),
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