By Kayley Usher and Myra Harris
This blog explores a difficult but common emotional side-effect of having arthrofibrosis - blame. This is a big undertaking, and we know that you may have different feelings, but this important topic deserves exploring.
Our own journeys with arthrofibrosis have been long ones, and many errors have been made along the way, both by ourselves and by others. Mistakes in dealing with knee arthrofibrosis in particular seem to be almost unavoidable, thanks to a lack of education about the complex nature of arthrofibrosis and the role of fat pads in joints, and because we need our knees to get around. We’re optimistic, and used to being active without many restrictions. There are pressures from society too, other people often think we look healthy and should be able do things like everybody else. Clinicians, partners and friends often don’t understand that for people with knee arthrofibrosis, exercising and weight bearing can cause serious harm that might not be reversible, and extreme care of the joint is an absolute priority for many months after surgery. For many with arthrofibrosis, considerable lifestyle changes are required, and friends and family may blame you for the impact of these changes and many blame themselves. So, blame can go in all directions; self-blame, blame levelled at you from a clinician and blame levelled by you at a clinician. The end result is that many people with arthrofibrosis are dealing with anger and difficult feelings around blame.
But first, what do we mean by “blame”. It’s easy to confuse blame and responsibility, but these are different things . People can be responsible for an outcome without being to blame. For example, if the driver who rear-ended the car had just been stung on the face by a bee that came through an open window, we would be right to say they were responsible, but not to blame. Parker and Davies say that blame implies a judgement of a significant flaw in character or motivation . When we begin to actually understand why something has occurred we can move past blame to a compassionate response  and forgiveness, and make changes to prevent further errors.
When things start to go wrong with somebody’s health it’s natural to want answers, but in the information-poor world of arthrofibrosis, answers are often hard to come by. It’s easy to jump to conclusions, and too often, the surgeon or physical therapist blames the patient for “non-compliance”, usually because they don’t understand why the joint is reacting the way it is. For example, some physical therapists may assume a patient must not be complying with the exercise protocol since they are not making good progress, or may mistake a lack of complying with a direction to exercise harder as a personality defect such as laziness or hypochondria.
Not understanding the nature of arthrofibrosis as an inflammatory condition that is made worse by overpressure and aggressive ROM exercises, it is understandable, but highly problematic, when physical therapists blame the patient when in fact it’s the body’s biological response that is making it close to impossible to comply. This can be devastating because not only is the patient dealing with the enormity of everything arthrofibrosis is doing physically, they can feel blamed and morally injured by the person they’ve turned to for help. Not having any other explanation provided to them by their providers for their poor progress, patients will often accept this assumption that they must be doing something wrong. This type of blame is never fair or justifiable; non-compliance with exercises is not the cause of arthrofibrosis. Arthrofibrosis is the result of the body’s overly enthusiastic response to injury. Blame from clinicians has no place in arthrofibrosis treatment. Sadly, it's common.
Living with AF requires a tremendous amount of self-monitoring and constant decision making about levels of activity in order to recover from a surgery and/or to manage it as a chronic condition. Avoiding self-blame, or negative self-evaluation, is difficult. Self-blame is a common reaction to stressful events, and health problems often have damaging effects on psychological well-being , especially where there is some level of resulting disability. Self-blame is associated with feelings of guilt, remorse and regret  and might occur even when mistakes in self-care haven’t been made. However, if an error has been made, for example being on your feet for too long leading to a recovery setback, this again is where we need to recognise that responsibility and blame are not the same thing. You were of course responsible for being on your feet too long but to “blame” yourself, to make a negative judgment against yourself, is inappropriate and unhelpful.
People typically acknowledge that they need to take some responsibility and an active role in the recovery of their affected joint, and are highly motivated to do the right thing. But things get very tricky, because it’s often not clear what the right thing is, since there is so little sound advice and clinical direction regarding arthrofibrosis to be found within the medical community. Therefore, the concept of “responsibility without blame” is particularly important for people with arthrofibrosis. A joint may recover from one mistake, but one mistake too many can result in somebody being in it for the long haul. But still, it’s natural to test the limits of activity, and to a certain extent that is necessary to understand where those limits are.
But exercise, or even any level of activity, has to be performed extremely carefully and increased incrementally over time as tolerated, because the pain and inflammatory reaction to exercise often take hours to kick in (think about the time it takes to realise you have sunburn). Unfortunately, we can spend far too much time on our feet, or exercising, before we realise we’ve overdone it. That is to say, the absence of pain in the moment is not a good guide to how the joint will respond. Sadly, for some people who overdo it the damage is not reversible, and self-blame can creep in. While taking responsibility and learning from a mistake can be productive and motivates us not to repeat it, self-blame and ruminating on mistakes can lead to depression and anxiety. It’s helpful to actively cultivate compassion for oneself - after all, it’s human to make mistakes, we all do it, especially when it comes to arthrofibrosis. By being mindful of where our thinking is going we can learn to stop beating ourselves up. The antidote to self-blame is self-compassion.
Blaming medical practitioners
As we know, arthrofibrosis devastates lives. The process of coming to terms with the losses, combined with the required changes in lifestyle, is immense and difficult. For many, this journey involves profound feelings of disbelief, sadness, and anger. Often there is a need to recreate a meaningful life on a whole new foundation. It is human nature to cast blame when tragedy befalls us. People who have had a bad outcome after joint surgery and/or physical therapy may understandably have powerful negative emotions about their care and these emotions can give rise to a feeling of blame towards the health professionals involved. However, it’s worth remembering that errors are made in all areas of medicine  and arthrofibrosis is an area that health practitioners have no official training in, and in which there are no professional resources or guidelines. For example, a common mistake in arthrofibrosis treatment is the belief that aggressive exercise and overpressure (forcing range of motion) of joints are necessary, but these practices can result in significant harm.
While it is appropriate to hold providers responsible for the care they provide, it is important to recognize blame often gets in the way of making actual changes in care delivery. Inappropriate arthrofibrosis care is indicative of the widespread and outdated misunderstanding of the condition, not the result of ill will or incompetence. As a society we need to move away from blame and encourage understanding and reporting of arthrofibrosis outcomes in order to help the medical community provide better treatment and prevent further harm.
In addition, a fear of reputational damage, repercussions and the hierarchical nature of many medical systems often prevents reporting . A culture of blame, and the associated defensiveness, discourages openness and change, and many people with arthrofibrosis have experienced this first hand. Many people are not warned that arthrofibrosis is a possible side-effect of surgery, or instructed on recognising the symptoms so help can be sought early. We need a system that encourages data input, analysis and feedback, without blame, to improve treatment outcomes .
In addition to errors, the outcome of surgery is never predictable for people with arthrofibrosis, and even with the best care a significant percentage of people will have adverse outcomes due to individual risk factors, including genetic predisposition and a history of surgery . Like the rest of us, some health professionals are unfairly self-critical and blame themselves for poor outcomes. Self-blame, together with the risk of blame from patients, can damage the care that patients receive when clinicians become less open and transparent or simply refuse to treat people with arthrofibrosis. Put simply, “blame is unsafe” and I believe that blame and the threat of blame have had a significant negative impact on arthrofibrosis treatment.
However, even if we believe a clinician’s actions have hurt us we can try to practice compassion. In these times of inadequate staffing and external pressures, health professionals are often tired and stressed, frequently lack control over the treatment they can offer, or they may be overwhelmed by this confusing pathology. Again, the concept of “responsibility without blame”  is useful, and it’s especially relevant to arthrofibrosis because there is so little information available. To cite Parker and Davies, “If a healthcare professional could not know that their actions would harm a patient, then they should not be held responsible” . For those who feel strong enough, and who have a clinician who is willing to listen, being able to support them in learning from their mistakes can be a powerful way to overcome negative feelings.
At the end of the day, anger and blame are not useful, and can add to already significant trauma. Coming to terms with having arthrofibrosis is an emotionally challenging process and experiencing negative emotions is a natural part of that process. Having support is essential, and having professional therapeutic support, when possible, can make a huge difference. But getting stuck in negative emotions, including blame, is not good for your body, mind or soul. Practicing compassion towards yourself and others can help to make you happier and safer.
If this blog has raised difficult emotions for you, please seek professional counselling advice.
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