One of the things I used to do before becoming ill was advise companies on managing outrage. Typically, the companies had done something egregiously bad. And so the best thing to do was to own up to the problem, sort it out, make sure the problem wouldn't happen again and get the issue out of the headlines as quickly as possible. However, some of the companies were big enough and ugly enough not to care very much especially when they rated the people they had harmed as inconsequential. Those companies usually would just carry on being egregiously bad (although in at least two cases, now that I think about it, the companies later imploded). Other companies, who perhaps had more to lose or who did value being seen to do the right thing, were influenced by citizen outrage. So, the perspective I have is that outrage can be useful, and can sometimes achieve change, if it is controlled and targeted, with anger turned into action. I think we need to make sure that we don't feel shame. Like sexism, racism and other prejudices, the problem lies in those with the bigoted views, not the people they denigrate. I have no doubt that there are people in Cochrane, for example, who think that people with ME/CFS are difficult hypochondriacs who just need to get off the sofa and stop whining. They will be proven wrong one day, and hopefully they will feel ashamed about what they did and did not do. I also think we need to try not to feel hopeless or dispirited. Countering people who do outrageous things is typically difficult. They do the outrageous things because they believe that they have power on their side and that they won't experience negative consequences. And, typically they do have power on their side and typically they don't experience negative consequences. But, there are lots of us. And we have truth on our side. Things can change quickly. The small thing that we do that did not seem to have an effect might actually contribute to the change. I think one key thing in managing outrage is to get allies. I count the regular members of this forum as my allies. We need to find more allies - journalists, politicians, health professionals, researchers, wealthy people ... People who can even up the power imbalance and be outraged with us. We need to make the public share our outrage so that it becomes more and more costly for the outrageous situations to continue. Outrage is powerful. That's not to say that we don't need to take care of ourselves, or find ways to live as well as possible between, or even while, dealing with outrageous things. And of course, for those people with severe ME/CFS, making it through the day is an act of heroic defiance against outrageous things and is more than sufficient.
On forums, it’s really useful to use the “ignore” button if there’s a poster who particularly upsets you
It doesn't take much outrage to turn me into a spluttering mess. I can't gather together what few thoughts I have so I'm very grateful to the incredibly knowledgeable and patient people here who calmly continue to post in the most frustrating circumstances.
Re @Hutan on outrage: The cruel thing about ME/CFS is that it deprives you of one of the useful tools for creating societal change - outrage. HIV/AIDS made headway through very angry protests. We just can’t do that. And the people around us usually can’t do that either because they spend all their time and energy taking care of us. If protesting just meant that I would get more symptoms for a while, I would do it in a heartbeat because it would be worth the suffering. But it means to risk my health long term. So I can’t. And that unfairness just adds to the outrage I experience.
That's very true. It is unfair. Thinking of some of the communities affected by those companies that I was mentioning, they had a limited capacity to express outrage and be heard too. Poverty - having to work really hard just to survive, having no resources; illiteracy, language differences and lack of technology skills; prejudice against them; seemingly powerless and distant from the seats of power. Sometimes, they found allies, people to tell their stories or stories that helped them - coincidentally, George Monbiot was actually one of those allies. They worked with other interest groups (for example conservationists, people who love orangutans, people concerned about climate change). Long Covid has created more possibilities for allies for us. Other allies might be people concerned about pseudoscience in medicine. Researchers making their careers investigating ME/CFS and Long Covid. Maybe drug companies. Maybe health insurance companies and governments will see that it is cheaper to find a treatment for the disease than to pretend it doesn't exist. The people who had the most success at using outrage, and spreading outrage, got better at using technology to get their own stories out from the remote places where they lived, out into the world. I didn't mean to say that the answer to managing outrage is for us to do more. I know most of us are already doing as much as we can. But, we have a lot of skills and a lot of useful connections among our communities. Maybe we can find more allies to help us? People whose interests at least overlap with ours sometimes? Outrage and feeling alone and desperate is very hard to bear. Outrage but feeling that others understand and are working to help make things better, outrage but seeing that things are getting better is more tolerable.
The right kind of contacts can do a lot. Look at when Andy Burnham championed Hillsborough justice.The editor of the Daily Mail, who happened to have hired the father of Stephen Lawrence just before he was murdered. There have been great strides made by Sajid Javid, Sean O’Neill, Sarah Boothby and George Monbiot.
Outrage relates to a sense of justice in the face of injustice, an assumption of rightness, that one is justified in protesting and a belief, a sense of trust, that all right minded people would agree protest was justified if they knew the facts. Which is why it makes sense to express them and in expressing outrage appeal to other people's sense of justice for their support and understanding. Today, this Maundy Thursday, I think the OBE etc honours given to the exonerated victims of the post office Horizon software scandal are a good example of the long arc of justice and the vindication outrage seeks to achieve, now everyone knows they were innocent meaning even while being maligned, prosecuted and imprisoned they were innocent and so are we. I also reflect on the traditional Maundy Thursday service of alms giving at Durham Cathedral today, which although largely ceremonial these days shows the crown's intent of compassion, a commitment to help the unfortunate and a sense of community stemming from the 13th century. I think this is important as it reflects and dignifies the basis of modern benefits and recalls a decision made then based on a sense of justice and propriety, at a time in history when the destitute could not always expect justice or even the means to live. I believe that decision reflects something in human nature, a sense of belonging. Intuitively I feel only those who feel they belong can dare to express outrage. Perhaps that is why I don't feel it. I am grateful proceedings in the House of Commons increasingly show governmental awareness and appropriate responses towards ME. When I reflect on my own past and lack of diagnosis for ten years, I remember I felt then I no longer belonged. It was only after diagnosis and recognition that I began to appreciate I should and the dimensions my sense of outrage ought to have but even now I do not feel it as I don't feel safe enough to feel it. After 38 years of either being ignored or fighting appeals against misassessment, I still don't feel like I belong. I feel like I am hiding. The dimensions my outrage should have relate to both the size and longevity of ME as a ubiquitous yet hidden problem. Hundreds of thousands of people in the UK alone suffer from this and it took covid for the rest of the human race to face it. The ranks of ME patients are now swollen with longcovid patients. The length of time this condition has persisted among us I believe is as long as human beings have been catching viruses and had an immune system. The way social attitudes and professional practices have normalised avoidance of recognising the condition exists and how this allows the longevity of the problem to increase and does nothing to improve the situation probably has its roots in ancient coping mechanisms which grew with us out of prehistory. Until now every generation turned away in fear with a look of pity on their faces and a sense of hopelessness that nothing can be done. Not animosity, just abandonment. I think it is the purpose of outrage to break this shell of habitual avoidance, apathy and ignorance which has built up around the reality of this our condition, as if wielding a chisel to reveal the fine details of a fossil lost in time and petrified mud, only now being brought to light.
Myisha Cherry writes about the concept of Lordean rage, which was very helpful for me to read in undergrad. Here’s an article where she describes the main points: https://www.newyorker.com/culture/q-and-a/a-philosophers-defense-of-anger it’s paywalled but you can use 12ft.io
