Article No 373
2 September 2020
The theme for aHUS awareness day this year is wellness and well-being. Two words which look similar but with different meanings. Together they sum up what recovery from a severe health event is about :
well-being the state of being comfortable, healthy, or happiness.
It is what all aspire to after experiencing any severe health event. It is no different for those whose severe health event was aHUS.
All who have experienced aHUS will be at different stages of a return to good health. They all pursue getting there. That pursuit is down to each individual but all can share ways of doing it.
It is perhaps an old fashioned term these days but resilience is at the heart of that pursuit.
Resilience is at the heart of those who have countered adversity and gained a strength to fight back. It is not super hero stuff, it is ordinary people having to make extraordinary efforts to get back, but gain strength in the process. Who has not heard that phrase “that which does not kill you makes you stronger”?
Last month, Linda Burke wrote an article (Article No 368)which encouraged people to think about themselves in the context of their current wellness and well-being state. To think about what they are doing , or have done, to get to where they are doing now. Also what more they are thinking of doing. “Can do thinking of a non victim” is what Linda’s article encourages.
Actively doing something about their mental health too is the follow up question in the aHUS patients research agenda topic “Does the anxiety and self-esteem of aHUS patients vary significantly between treatment types and what can be done to reduce and boost them respectively?“ Anxiety is something reported by some patients long after the trauma of the aHUS encounter.
A few days after Linda’s article this author read an article about people facing recovering from a disaster in their working life . Not on the scale of great importance than those who know otherwise but it is what normality is like. The article featured practical advice from psychologists about how to deal with it.
If the word “work“ was replaced by “health“ the message would be just as applicable, even if the relative enormity was on a different scale.
At the centre of the advice was using and developing someone’s personal resilience to adapt and bounce back. Not to wallow and dwell but to accept, learn and move forward.
One psychologists puts it down to :
Accepting challenge, learning lessons from what has happened to grow and not let negative thoughts destroy your self esteem. It was not you.
Display commitment to life and the personal goals you set yourself. Have something to keep you motivated. It could be work, family/friends, causes or beliefs.
Take personal control of what you can influence and not waste effort on things you cannot. Being empowered raises confidence and self esteem. Do what you can and then worry , sense of loss , helplessness and powerlessness subsides.
Another psychologist saw resilience being tempered by optimism or pessimism and a need to see the adverse event as temporary not permanent. The phrase “ This too shall pass” comes to mind. Also that set backs are specific and do not affect everything . Again it is also not you.
A third psychologist advocated
seeing a positive image of the future
setting personal goals with a desire to achieve
having empathy and compassion for those around you
not being a victim and changing what can be changed
It is about developing a resilient mindset to overcome adversity and stress. In doing so accepting that failure happens and mistakes can be made. You are human like everyone after all. Only those who do not do , do not fail. Trying new stuff is good. Over come set backs, bounce back in pursuit of the future you are striving for.
The article concluded with a familiar list of common sense things to do build up resilience:
get plenty of sleep and exercise enough
develop a positive thought awareness
think differently about yourself ,be less critical
learn from mistakes , you are going to learn often
allow post traumatic growth
your reaction belongs to you
keep things in proportion
set goals that test but not over test you
build up your self confidence gradually and your self esteem will follow
remember strong relationships are mutually beneficial
be prepared for change its normality.
The alliance video project, which is a part of aHUS Awareness Day, is full of ways that people around the world ,who have been struck by aHUS, have adopted for themselves. Mostly adopted because of good old human common-sense . But when the video is watched a lot of professional advice can be seen in what each patient does.
That is why it works. It is what the psychologists have observed in their work with other people too. When it comes to resilience all psychologists have more or less the same to say.
aHUS people being resilient and doing themselves and others some good is an answer to the feelings of anxiety and depression that may linger after aHUS.
2020 aHUS Awareness Day is on 24 September
Subscribe to the aHUS alliance Global Action newsletter for its special aHUS Awareness Day edition click on this LINK.