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.