Many people with long term health conditions require and deserve support with specific problems such as grieving for lost (or drastically affected) life plans and adjusting to being ill.
As well as coping with the ‘individual’ knock-on effects of being ill there are social implications too – navigating diagnosis, coping with medical interactions and tests, or relying on state benefits. The process of diagnosis can take years and go through many frustrating stages – in particular when symptoms are wrongly ‘put down to’ psychological issues.
As a report by the British Government says: ‘Many people have reported negative attitudes towards them from family members, colleagues and friends, due to misconceptions and lack of awareness about ME/CFS’. Living with this takes an emotional toll and makes it much harder to cope with being ill.
Research has moved on
Research has advanced a lot for medical conditions such as M.E., Long Covid and these are now proven to be conditions with biomedical causes that ‘mindset’ and ‘positive thinking’ can’t solve. The experience of patients ‘on the ground’ continues to be very mixed with many health care professionals untrained in this area, or still under the influence of outdated attitudes.
Isn’t it ‘just anxiety’? Maybe the roots of your condition are ‘in your trauma’?
Many who turn to therapists for help report frustration at outdated ideas – graded exercise therapy is still sometimes encouraged for M.E. and Long Covid patients. Some therapists wrongly believe these conditions indicate past trauma that needs resolving. Postural Orthostatic Tachycardia is often misdiagnosed as ‘anxiety’ with the underlying cause (raised heart rate on standing, due to problems with the autonomic nervous system) left undiscovered and untreated. This can make finding a therapist capable of giving informed emotional support very difficult.
Can’t you find people experienced in working with M.E. and similar conditions in general directories?
You can try – but you will struggle to easily identify well informed therapists. Many therapists and other health care workers have been taught that M.E. is a case of people being deconditioned due to lack of activity. Some believe patients are exhibiting physical symptoms due to unaddressed emotional trauma in the past. Others may believe the symptoms are caused by false illness beliefs which need to be challenged so that a patient over rides their urge to rest. In fact, rest and pacing of activity is one of the most important things a patient with M.E. can do to help themselves.
There has been no large scale effort by regulatory or professional bodies to challenge this, and there are no checks to ensure that people listing themselves on professional websites are aware of the massive U Turn that the 2021 guidelines represent.
People living with long term conditions are often coping with huge and distressing changes in their lives and deserve intelligent, well-informed and up to date support from therapists.
