The experiences of parents and family who care for individuals with Severe ME is rarely discussed within literature. Given the severe limitations in functioning experienced by individuals with ME, there are likely unique challenges for those who act as carers.
Living with ME as a carer may mean coming into contact with skepticism, disbelief, blame and hostility from others, including not only medical professionals, but friends and family as well. As a result, parents find themselves disconnected from others who may not respond well.
Themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management are part and parcel of the lives of family carers.
‘Lost Voices from a Hidden Illness’, a published book about Severe ME (Boulton, 2007), provides valuable insight from the perspective of parents supporting those with Severe ME. The book is a collection of passages from individuals with Severe ME, their significant others, and carers that aims to raise awareness of the impact of ME and to allow individual voices to be heard.
Unfortunately the book is no longer being reprinted and copies are hard to obtain; however, Leonard Jason and others have reviewed the book.From an informative and revealing study based on ‘Lost Voices of a Hidden Illness’, i.e. a 2015 study by Jason et al, themes were found in the analysis of the Carer’s Role in Severe ME. The following themes from the study, along with quotes from parents of children with Severe ME, provide overviews of the challenges of carers to those with Severe ME via excerpts from the study. (whenever a direct quote is used a pseudonym is attributed to that person):
- Identity Change
- Changing role
- Guilt
- Feeling like outsiders
- Distancing
- Isolation
- Uncertainty
- Relapse/remission and false hope
- Prognosis/Death
- Changing perceptions of time
- Coping mechanisms
- Improvements/Symptom Management
The following section includes excerpts from the 2015 study entitled ‘Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences'
IDENTITY CHANGE
‘The most significant and consistent experience shared by parents was the concept of “change.”
Themes that fell under this category described changes that parents experienced as they became carers for their sons and daughters with ME. ME impacted various aspects of their identity, such as their roles within their families, including relationships, and aspects of their lives outside of their families, such as their careers. These descriptions suggest that living with severe ME is totalizing in that their lives were globally affected by their child’s illness.’
Themes that fell under this category described changes that parents experienced as they became carers for their sons and daughters with ME. ME impacted various aspects of their identity, such as their roles within their families, including relationships, and aspects of their lives outside of their families, such as their careers. These descriptions suggest that living with severe ME is totalizing in that their lives were globally affected by their child’s illness.’
CHANGING ROLE
‘Parents take on roles as carers, serve as advocates for the illness and their children, and support their children as educators.
Elyse wrote, “I have to be on hand all the time, always forewarned, always prepared, but at the same time trying to help with whatever gives her pleasure, a sense of progress and achievement; sewing seeds and watching the plants grow; keeping the bird feeders topped up; making patchworks where she may help arrange the colours; or now occasionally on the better days going for little slow drives, delighting in the outside world, the light and colours changing, the birds and flowers changing with the seasons.”
For Elyse, being a caregiver also means helping her daughter find enjoyment. While Elyse describe her role as a full-time caregiver, being a carer for someone with ME may also mean being an advocate in ensuring she has the opportunity to continue her education.
Holly reported as to her role, “We put a lot of effort into trying to make it possible for [our daughter] to carry on with her education. The school was happy for her to be absent as she had a doctor’s note and they soon forgot she existed. We did everything we could to make it easy for the teachers to send work home but despite promises it mostly didn’t happen. If we hadn’t persevered the education system would have happily ignored her completely. In the end [our daughter] studied with the help of us parents and then by herself to get through GCSEs, just the minimum.”
Not only have parents described the ways in which their roles within their families have changed, but also the way this has affected their own well-being.
Erin, who is the sole carer for her daughter, wrote, “As a twenty four hour carer I have little time to think excessively about the future. In some ways my own life is very restricted and inevitably I am constantly exhausted and sleep deprived.”
The parent role is redefined to include caretaking responsibilities, which, as Erin described, may impact parents’ well-being. The role of parental carers is a balance of providing day-to-day care for the person who is ill while also providing affection.. Parents may struggle to find ways to provide affection to their children who are often in great pain; in essence, ME may change the way in which parents relate to their children.
Charlotte described that, “As a mother, the most natural thing in the world is to gather your child in your arms and make everything better with a kiss and a cuddle. For too many years I was unable to do this for my daughter… Every part of her body hurt so much she couldn’t bear to be touched.”
Although others have also reported the level of physical affection being limited due to the son or daughter’s sensitivity, some parents reported focusing on fulfilling needs of their children, particularly in terms of physical affection, and reported needing to establish “contact” themselves.
Amy noted that, “On a good day she would just ‘hold’ my thumb, well I’d ‘rest’ it, between her thumb and finger; it was all she could manage and nothing like the cuddle we both so desperately needed, but it was some level of contact; the contact, the comfort, she so desperately needed, as she felt so desperately ill.”
Parents experience a change in the way they relate to their children as a result of living with ME. This change leads to new roles, which, in turn, affect the way parents relate to others.’
GUILT
‘Parents reported feeling guilt, manifested in terms of neglecting other relationships, not providing enough support to their child with ME, or wishing they had done or could do more. The experience of changing roles, responsibilities, and pastimes not only for the individual, but also in terms of the family as a whole, may have contributed to these feelings of guilt for some parents.
Mia wrote, “I personally have a terrible feeling of guilt, that I am not giving 100% to the rest of my family. I feel like an olive tree with all these branches trying to give enough time and love to everyone else in the family. ME has became my life.”
As reported by Mia, living with ME is totalizing as being a carer means dedicating oneself to various responsibilities that may result in feelings of guilt over neglecting others. Guilt may also manifest in other ways.
Similarly, Jack wrote, “The necessity of a day-job is a double-edged sword. It removes and relieves one from having to see this illness play out its effects on my daughters during the day - only to replace it with guilt at not doing enough when confronted with it in the evenings or weekends. Guilt becomes a constant shadow for a parent.”
While working may provide a form of escape for Jack, he reports feeling guilty due to being away throughout the week.
Thomas reflected, “With hindsight I am ashamed to say that the first indication I had of [my daughter’s] illness were the days when she wouldn’t go to primary school because she was so tired in the morning; I literally dragged her off to school. Even when she attempted secondary school I had no idea that her best friend was carrying her books around between lessons.”
In all three of the above quotes, the phenomenon of guilt is brought to light. One parent feels that she dedicates all of her time to ME and feels guilt over neglecting other areas of life, while another parent feels guilt due to not being involved enough in caretaking duties as a result of his work. And yet another parent feels guilt and shame over the way he interacted with his daughter, mainly for pushing her without understanding the severity of the symptoms. This phenomenon of guilt appears when the carer reflectively evaluates his or her performance as a carer in a negative light.’
FEELING LIKE OUTSIDERS
‘This theme presents a phenomenon that was experienced by many of the parents, which can be described as one being isolated, misunderstood, and feeling a general lack of belonging in many facets of his or her life.
Negative responses from others parents reported that they were often met with disbelief and hostility from medical professionals. They also reported that close friends and other family members were skeptical and perplexed by the illness.
Andrew described, “It’s not just that the whole bureaucratic machine seems somehow designed to stigmatise the long-term sick, to make them feel that they are second-class citizens, malingerers or at least somehow responsible for their own misfortune. But behind that there’s the way that after a while people - after weeks, months, certainly years - start to give off subtle and not-so-subtle signals that they really don’t want to know about your daughter’s continuing illness or its effects.”
Alice wrote, “I cannot emphasise how horrendous they were to us at this hospital; [my son] still has nightmares to this day. They treated us like we were paranoid and were wasting their time….We knew that pushing him beyond his limits had terrible consequences for his health. Others did not see this as we were only able to see them on [my son’s] ‘good days’ so of course they never saw that he paid for those days with weeks of ‘bad days’…
There are people that struggle to believe [he] is unwell as they do not see him unless he’s well enough to do so.”
There are people that struggle to believe [he] is unwell as they do not see him unless he’s well enough to do so.”
Lastly, Andrew described, “A fear sometimes so strong that even blood relatives would rather believe that you’re making it all up, that it’s your fault, than really acknowledge the reality of what a long term illness like ME means for those who must live with it day by day.” '
DISTANCING
‘Taking on a new role results in much of the parent’s time being allotted to caretaking responsibilities. As a result, parents reported being distanced from relationships with other family members, from their hobbies, careers, etc., particularly when they are the primary carers.
Elyse wrote, “I retrained and pieced together a second career that could be continued sporadically and if necessary at home, but that too had to be abandoned as she was now too ill. I’d enjoyed listening to music, but that became impossible; the house must be quiet and I must be ever vigilant and attuned to respond to a faint call or a crash if she passed out…”
Jack discussed his wife’s distance, “I see my wife, her career disappeared, spending countless hours well into the early hours researching this illness, hoping to find something which can help make a difference - her life put on hold while she becomes the unpaid, full-time carer.”
The theme of distancing was also manifested in the relationships within the family unit. Parents describe how their relationships with their spouse and children have changed. In most of these families, one parent takes on the role as primary carer. This often creates a new relationship between the caring parent and the son or daughter with ME.
Max wrote about his situation at home, “My being at home eases the pressure a little on my wife, and gives her a little more freedom, although when [my daughter] is having a particularly bad day, the only person she wants is her mum. Sometimes this hurts but I know I have not been here much and I don’t understand the illness or what she needs like my wife does. [My daughter] trusts her mum, they have been together day and sometimes night for the whole length of [my daughter’s] illness; she knows what [my daughter] needs without her having to say and explain, I don’t. I still have an awful lot to learn, but I’m trying.”
The theme of distancing also extends to the way a family, as a unit, spends their time. Parents report that their family plans and habits have changed.
Emily described her family life, “We are cocooned as a family. There are no family holidays, as [my daughter] is too ill and needs care 24 hours a day. So, she never gets a break from her environment. One of the saddest things for me to watch has been [my daughter’s] friends losing contact one by one. This was one of the cruellest blows.”
As a result of this distancing from their life before ME, others have grown distant from them as well.’
ISOLATION
‘Parents felt alienated (such as feeling “cocooned as a family” or “prisoners in our own home”) and reported being estranged from friends and family as the role of carers became their priority. Because there is a lack of understanding by those who are not immediately impacted by the illness, carers are left feeling alone in their world.
Elyse wrote, “We cannot invite people back to our house because their everyday detergents and smells precipitate excruciating head-pain for [my daughter], but neither are we free to visit them.
Our concerns can not be shared by those who do not understand a situation that doesn’t make sense unless experienced, and cannot be experienced by others without making her more ill. So we are met with disbelief and incomprehension.”
And she continued on by saying that,“[ME] defies all expectations. It cannot be fought in the usual way of struggling with problems. Hardworking confidence, persistence and carefree optimism, become a vicious trap creating further illness, relapses and isolation.”
Emily described her isolation, “I think the main feeling I have about it all is the isolation…there are no family holidays, as [my daughter] is too ill and needs care 24 hours a day. So, [my daughter] never gets a break from her environment.” ‘
UNCERTAINTY
‘Along with feelings of isolation and invalidation from others, parents also reported feelings of uncertainty in regards to a diagnosis and prognosis, particularly following phases of remission and relapse. Carers report wanting to do something for their son/daughter, but feel they do not know where to turn or what to do.
Holly discussed feeling uncertain, “Time is spent learning about the illness and trying to find answers as no one in the healthcare profession has been able to explain their illness. They were diagnosed and left at that. Any symptom or sign they presented with afterwards was put down to as ‘just ME’. It is hard enough to look after two sick children let alone do the medical problem solving by oneself as well. ”
Mia described her uncertainty, “As a mum the stress and anxiety from living in fear of the unknown, of what ME is going to bring my son next, is unbearable. I’ve forgotten how many times I have thought that I have lost my son to ME…. Everyday is a day of existence, we don’t know what ME is going to bring us today.” ‘
DIAGNOSIS
‘Parents report difficulty obtaining a diagnosis, such as misdiagnosis and lack of consensus among medical professionals in diagnosing ME.
About an ME diagnosis, Jack said, “Uncertainty surrounding the diagnosis and prognosis keeps the mind in a limbo balanced between previous aspirations and current realities. ME is an illness of changing horizons for a parent. Life goes on - this will be short-lived, over in a month or so. We look for an early recovery but the realisation gradually forms that it is going to be longer before this illness finally goes.”
For many parents, receiving the diagnosis only perpetuates uncertainty, in that there is no course of action for the individual to follow. The quotes above and below describe the uncertainty that stems from the futility of receiving a diagnosis of ME.
Jack continued to describe the struggle with diagnostics, “Though our GP is sympathetic we find that ME is treated by the healthcare profession with a level of ignorance bordering on negligence and come across innumerable stories of doctors who have closed their minds to the truth about ME. A catch-all name of CFS is given to a dead-end medical diagnosis which the medical profession seems happy to allocate to any patient where the cause of illness cannot be determined.
How can healthcare professionals not have a passion for questioning and curing? Our paediatrician may offer CBT or GET, which are either pointless or harmful, but getting a simple blood test performed to look for an infection is refused. A potential thyroid abnormality is left undiscovered for ages.” '
How can healthcare professionals not have a passion for questioning and curing? Our paediatrician may offer CBT or GET, which are either pointless or harmful, but getting a simple blood test performed to look for an infection is refused. A potential thyroid abnormality is left undiscovered for ages.” '
RELAPSE/REMISSION & FALSE HOPE
‘Parents discuss difficulty in seeing their son/daughter relapse, particularly when there has been improvement prior to relapse. Parents talk about how a misdiagnosis with a non-life-threatening illness and temporary improvement offered hope. This hope is then lost and causes further grief, exacerbating the anxieties of living in uncertainty.
Amy wrote, “It’s been seven years since [my daughter] became bed bound. Yes, we have, at times enjoyed improvements, but they’ve always been short lived…
Despite our very best efforts and guidance from these specialist therapists, [my daughter] has remained intrusively symptomatic and continues to function at a low level. Yes there have been improvements, but, with frequent relapse, there haven’t been significant sustained improvements.” '
PROGNOSIS
‘Parents talk about fears of death when their son/daughter was at her/his worst.
Charlotte wrote, “She was so still and her face so grey that her younger brother commented that she looked dead. How I feared she would die. How I prayed that every silent, shallow breath would not be her last.”
And Amy explained, “Throughout the most severe times of [my daughter’s] illness, there have been many times, too many, when I’ve not known whether she was unconscious, or even alive.” '
NB: All of the above excerpts and further themes are available from the 2015 study entitled ‘Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences' here
Review by Goodreads of 'Lost Voices from a Hidden Illness'
"The name 'Lost Voices’ refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME - as an ‘aberrant belief’ rather than a devastating physical illness – has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.
Art has the power to move people, and combined with documentation 'Lost Voices’ brings the situation more vividly to life.
'Lost Voices’ is primarily written by people affected by severe ME- whether as sufferers, carers or families - those very severely affected – house-bound or bed-bound - are represented.
The book provides the following –
It provides an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
It clearly and movingly shows the evidence of the devastating impact this physical disease has on individuals and their carers and families.
It will bring to more public notice the plight of ME sufferers.
It will help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
It can educate the medical profession, the public and others such as wider family.
It will, hopefully, encourage a sense of community among ME sufferers and those supporting them.
The stories and photographs are provided by carers, families and, as far as possible, people with ME themselves. 'Lost Voices’ represents different families, showing the impact of the illness on all family members and sufferers and carers."
Art has the power to move people, and combined with documentation 'Lost Voices’ brings the situation more vividly to life.
'Lost Voices’ is primarily written by people affected by severe ME- whether as sufferers, carers or families - those very severely affected – house-bound or bed-bound - are represented.
The book provides the following –
It provides an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
It clearly and movingly shows the evidence of the devastating impact this physical disease has on individuals and their carers and families.
It will bring to more public notice the plight of ME sufferers.
It will help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
It can educate the medical profession, the public and others such as wider family.
It will, hopefully, encourage a sense of community among ME sufferers and those supporting them.
The stories and photographs are provided by carers, families and, as far as possible, people with ME themselves. 'Lost Voices’ represents different families, showing the impact of the illness on all family members and sufferers and carers."
Thanks to Natalie Boulton and people affected by severe ME for your book 'Lost Voices from a Hidden Illness'.
Thanks to Leonard Jason et al for your work on the subject.
