Convalescence

Whatever happened to recovery by the seaside?

Convalescence is the gradual recovery of health and the regaining of strength following a period of illness or injury. It is the process if returning to wellness and the period of the time in which this takes. The roots of the word lie in the Latin for to become strong.

Convalescence comprises of multiple aspects. Physical recovery requires rest so that the body can rebuild tissue, regenerate cells, restore organ function, restabilise the immune system and replenish energy reserves. Functional recovery supports the gradual return to independence with activities of daily living. This could be walking or moving around, carrying out personal care and household chores and taking on adequate nutrition. Finally psychological recovery must be considered which may involve emotional adjustment to physical changes of body and mind, anxiety about recurrence or recovery limitations and length, identity shift, frustration, guilt and grief. The duration of recovery is highly variable and not linear. Recovery from surgery may be a matter of weeks or months, but for chronic illnesses, such as fatigue, it is more likely to be months and years.

In the past people recovering from illnesses such as fatigue were provided with purpose built convalescent homes and treated using the Victorian model of passive rest and fresh air, particularly sea air. This was the standard. If someone had a long term illness they were cared for in a dedicated space. It was accepted that this was what was required, that many illnesses needed a lot of time from which to fully recover. There were between 150 and 300 convalescence homes in the UK at their peak. The exact number is difficult to ascertain as they were privately run and of varying sizes. The wealthy had access to privately funded establishments of varying size and luxury, while the poor had to rely on charity, which meant limited placements and waiting lists limiting length of stay in some cases. But they were the norm, as was taking adequate time to recover from illness. What the hell went wrong?

The convalescence home as an entity was phased out following the second world war. Many convalescence homes were commandeered as temporary hospitals during this period, and the National Health Service (NHS) was formalised in the UK in 1948, at which point many of the larger homes were transferred to NHS ownership. Due to the sheer scale of physical trauma brought home by war casualties, the newly formed health service had to change its processes. A more functional approach was adopted with emphasis on rehabilitation and return to independence as quickly as possible. Convalescent homes for in-patients became out-patient rehabilitation centres. Psychological recovery was completely abandoned, at a time when it was arguably required the most. Those returning soldiers were not supported to deal with the horrors of war they had just witnessed, and who knows what damage that went on to do long term to them and their families.

In 1956 the Guillebaud Report scrutinised NHS efficiency and pushed the discharge and planning model rather than in-patient recovery, and by the late 20^th century convalescent homes had all but disappeared. Holistic recovery as a concept was mostly forgotten about, which is not entirely unreasonable in a country recovering from participation in a devastating war, but it was never truly picked back up again.

I know this shift was not malicious and was born from necessity. I know we are extremely lucky in the UK to have a free at point of contact health care system. I know it is chronically underfunded and this article is in no way an attack on the individuals who work within the system or an ungrateful personal lash out at a system doing its best under the heft of late stage capitalism. Make no mistake, this is a commentary of the lack of prioritisation and funding by the UK government for healthcare. If there’s money for defence and politician expenses, then there is money for healthcare.

Since the 1990s the National Institute for Health and Care Excellence (NICE) guidelines, the guiding framework of the NHS which must be adhered to in all treatment processes, have been issuing recovery pathways which are increasingly community based. The Department for Work and Pensions (DWP) has evolved its benefits system away from disability and illness (Incapacity Benefit) towards the assumption being rehabilitation towards recovery and eventual return to work (Employment Support Allowance/Universal Credit). Which is not inherently bad in itself, but not everyone is looking at recovery, and if they are it might not be anytime soon. Again I am specifically referring to people with chronic illnesses here. And if those afflicted cannot be manhandled into a neat recovery pathway or rigid functional criteria, those people are not in receipt of assistance.

Feeling abandoned by the systems which are supposed to care for us is a universal theme I have seen within the chronic illness community. Not a single person I have met or spoken to, in either my personal or professional capacity, has had a straightforward diagnosis or treatment. Including myself. I have been dismissed, unheard, gaslit and abandoned. Repeatedly. I have had GPs literally tell me my symptoms are psychosomatic, that they appear to be just anxiety (as if anxiety is not something with the propensity to be massively debilitating in itself, but I digress) and probably just [insert whatever unrelated thing I have just mentioned which can be grasped at] and will likely go away on their own. I finally have a diagnosis of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) but before that my symptoms have been attributed to: stress, anxiety, withdrawal from anti psychotics, normal recovery from a virus and my imagination. All that over the course of one year and multiple GP appointments with multiple GPs. My test results were normal, which I was told was reassuring. It was not reassuring to keep returning only to be dismissed and then eventually begrudgingly referred to a specialist service. When I go in now I am still not certain I am treated with respect or belief. And to recap once again: I am a medical professional with almost a decade experience in disability analysis, and all of my doctors know this about me.

It is no wonder, when all the above applies to all the people reaching out for help for chronic illnesses, that a state sanctioned rest in a beautiful building near the seaside is so appealing. ME/CFS and friends is an energy depleting illness affected not just by physical activity but by cognitive, emotional and mental strain and exertion. The system is very likely making people worse by being so inherently challenging to engage with. Until very recently the advice has been for graduated exercise programmes with the offer of a gym membership on prescription and tailored exercise programme, until it was acknowledged that this was making some patients worse, particularly those with long Covid flavoured ME/CFS like myself. But people had to drop dead before this was accepted, listening to the patients themselves was apparently out of the question.

I know that the NHS has done all it is going to do for me and my condition. I have my diagnosis, I am being seen by the specialist service following a ten month wait. I am very lucky, many areas do not possess a dedicated fatigue clinic service at all. I was referred to the pain clinic as well but that was declined as I was awaiting input from the fatigue crew. Having co-morbidities or even co-exiting symptoms is not catered for simultaneously. I get it. The role of the GP is to rule out an emergency and refer to secondary specialist services. They have done that, they have fulfilled their obligation, even if it did take them unreasonably long and they behaved like I was a lunatic the entire time. But is not also their obligation to care for patients with respect, dignity and compassion? Or has that been cut as well?

As I lie here typing, because the effort of sitting up at a desk is one of the most fatiguing things for me to do, lucky enough to have a conservatory filled with light and weather clement enough to keep the door open to let fresh air in, I cannot help but contemplate how much better I would likely recover if I did not have to consider the stresses of modern life and capitalism and could enjoy a convalescence without fear of judgement, threat of financial difficulty or pressure to name an end. The first time I had Covid, 5 years ago, I was very unwell for about 9 months, and the final part of that I spent in my van travelling around the UK in partial lockdown enjoying fresh air every night and a gentler pace of life. I really do believe it helped my recovery.

So I have taken on convalescence as a mind set to try and aid my recovery. I will get as much rest and fresh air as is possible. I will practice radical rest techniques and I will try not to overdo it on the days I feel a little better. I will engage with the clinic and do as I am told. I will continue to research and understand what is happening to me. And I will continue to write about it, when I have the energy, because it helps me, and maybe it can help others too.