By Joanne Hunt (@JoElizaHunt)
As with so many people living with M.E., the losses I have sustained due to this illness are too numerous to count, and sometimes too overwhelming to reflect upon in their entirety.
When I think of how many years I have lost to being bedbound or housebound and unable to pursue personally meaningful pathways in life, I want to cry – and not infrequently I do.
When I think of how many times I have tried to pick myself up after more than two decades of significant losses (two careers, a few relationships, numerous friendships, financial and physical independence, personal faith and worldview amongst them), I feel angry.
When I don’t have the energy to feel angry, I often feel low. That all seems very reasonable to me: as a qualified psychological therapist (too ill with M.E. to practice) I believe that much of what gets framed as a mental health ‘disorder’ is actually a very normal and understandable response to human suffering.
And living with a highly disabling physical illness that is barely even acknowledged, let alone effectively treated, is definitely up there in terms of human suffering.
I’m not sure which is more painful: negotiating the losses associated with M.E. or finding that those losses (and the grief they elicit) are generally unacknowledged by others. For me personally, the lack of acknowledgement is probably worse.
Although I recognize that the experience of loss is unique to each person, I suspect that the losses faced by many people with M.E. are in some ways uniquely different to almost every other patient group.
Deprived
My reason for suggesting this is because the losses associated with a contested illness often go unacknowledged, and the resulting grief can be described as disenfranchised – not socially or culturally acknowledged.
Such disenfranchisement typically arises when characteristics of the loss, grief response or griever are broadly perceived within society to be relatively insignificant or threatening to social norms and is often associated with social stigma.
As many people with M.E. know only too well, living with this illness frequently engenders multiple losses over every life domain: loss of employment and education, loss of friendships, loss of physical and cognitive function, loss of becoming a parent, loss of an intimate relationship, loss of being able to pursue hobbies and interests, loss of confidence and self-esteem, loss of an expected future… even something so fundamental as loss of personal and social identity.
Yet, I find that such losses are generally very poorly recognised within society: both more broadly (structurally and collectively) and within individual, person-to-person interactions.
Coronavirus
I want to draw upon some examples of such unacknowledged losses from within the current treatment of Covid-19 through mainstream discourse.
By discourse I mean ways of thinking and communicating within society on any given topic, which both reflect and construct shared understanding. By mainstream I mean relating to social majority groups, in this particular case with a particular focus on relatively fit, healthy, able-bodied people.
Although the following also pertains to people with chronic illnesses and disabilities other than M.E., I suspect that people living with contested medical conditions (such as M.E.) are at greater risk of being unacknowledged and excluded through mainstream assumptions.
As somebody who self-identifies as a person with disabilities (or a disabled person, I increasingly use both terms), I hope that I don’t alienate people with M.E. who do not identify in this way, or who feel strongly that one term should be used over the other.
I also hope I don’t unintentionally offend by necessarily having to reduce what are actually complex patterns of intersecting identities into an oversimplified dichotomy of able-bodied and disabled.
I try to write as inclusively as possible but I’m aware my perspective is just one of many and will not resonate with every person who has M.E. I hope though that what follows may resonate with people who do not have M.E.
Many people within the chronic illness and disability community, including people with M.E., have pointed out that Covid-19 is indeed unprecedented in recent times, since all of society is now experiencing some of the concerns that were previously the province of society’s less privileged members.
Health-related uncertainties and fears, isolation and inadequate health and social care provision all entail significant losses and constitute a daily reality for many people with chronic illnesses and disabilities, global crisis or no global crisis.
Yet, the overwhelming majority of Covid-19 news stories involve able-bodied people discussing such issues from an able-bodied perspective, which (unintentionally I imagine) further marginalise people who are already marginalised.
Frustrated
I recently came across an online newspaper article highlighting how exhausting many people were finding self-isolating. The article featured a healthcare professional who explained how ‘everybody’ is experiencing a grief response to loss of personal freedoms and ‘normal’ routine as a result of lockdown. It also featured tips with how to cope with such losses, such as exercise and a good night’s sleep.
Whilst I am very much in favour of raising awareness around psychological health issues, particularly when presented as in integral part of the human condition rather than a form of psychopathology, I baulked at the suggestion that ‘everybody’ had experienced a sudden curtailment on their social sphere as a result of lockdown.
What is ‘normal’ life for the social majority is apparently considered the standard against which the rest of us should measure ourselves. I did not consider myself to be represented in any way by this article, yet apparently it applied to everyone.
What does that make me? Nobody? Or perhaps somebody who matters less than other people? In asking these questions, I’m also acutely aware that I am relatively fortunate as a member of the M.E. community; it concerns me how such blinkered, mainstream assumptions might impact on people with M.E. at the most severe end of the spectrum.
This newspaper article, like the huge majority of talk around Covid-19 I have encountered, did not acknowledge let alone address the fact that many people experience prolonged isolation and profound limitations on their activity (entailing multiple losses) as a daily reality.
Some people with M.E. describe being locked, imprisoned or isolated within their own bodies, hypersensitive to any sensory stimulus from outside or within themselves; this is something I can very much relate to when my ME is at its worst.
For some people, this is a 24/7, year on year reality that might span decades – a far cry from the experience of most healthy, able-bodied people staying at home for several weeks as a result of lockdown.
As for the article’s advice on exercising and getting a good night’s sleep… I don’t think I need to highlight the painful irony of this for people with M.E.
Thus, a framework is created by able-bodied people for other able-bodied people to understand and address their experiences of loss, whilst those who are arguably most in need of such frameworks are excluded.
Excluded
I want to emphasise that I am in no way belittling the psychological impact of Covid-19 on relatively healthy and able-bodied people; I understand able-bodied concerns and I absolutely support initiatives to raise awareness around mental health, both during and outside of global crises.
I am simply pointing out that people with chronic illnesses and disabilities (I would argue especially contested ones) have historically been systematically excluded from mainstream society – and Covid-19 appears to be no exception.
Such exclusionary discourse not only fails to recognize losses associated with long-term illness and disability, but also adds ‘loss of legitimized reality’ to the list.
I should mention though that the above-mentioned article is just one of hundreds of stories and reports in mainstream media that I’ve encountered over the last couple of months, all coming from similar ableist perspectives.
Official government advice on managing mental health around Covid-19 largely reflects such perspectives: learning to manage a ‘new’ daily routine of self-isolating through regular sleep routine, exercise, pursuing favourite hobbies or taking up a new one.
I suspect that much of this exclusionary discourse is unintentional, arising from a lack of awareness, so my intention in writing this is not to blame but to help raise awareness. That said, as somebody who has experienced increasing marginalization over the 20 plus years I’ve been diagnosed with M.E. (which took a further 10 years to be diagnosed in the first place), I’m not clear on why it is taking so long for this mainstream awareness to manifest.
Marginalised
You may think that much of what I’m discussing here is ‘only words’ and that maybe I’m making too much of it – sticks and stones as the saying goes. But you’d be wrong.
Exclusionary discourses are pernicious in that they often go unchallenged, yet they inform social practice and policy. Consider some of the concerns repeatedly raised by disabled people and advocacy organisations in the face of Covid-19.
These concerns include accessing public health information and reduced levels of health and social care, being able to enact government instructions around hygiene and social distancing (for example when dependent on carers and care workers), questions over in-patient triage decisions and patient-centred care provision.
These concerns are pertinent to people severely and very severely affected by M.E. How often are these concerns addressed publicly in any depth by the government or mainstream media? Ask yourself why it has taken a global crisis for telemedicine, working from home and distance learning (all which have greatest benefit to chronically ill and disabled people and for which many such people have campaigned for years) to become standard practice.
All of a sudden we have mainstream talk of community and solidarity, yet the very people who would benefit most from this have historically been (and continue to be) marginalised or excluded from such. Both during and outside of global crises, marginalising talk and marginalizing practice tend to go hand in hand, each influencing the other.
An interesting example of unintentionally marginalising discourse fuelling unintentionally marginalising behaviours is the way in which the #clapforourcarers initiative recognises all mainstream healthcare professionals and keyworkers yet fails to recognize unpaid carers.
By unpaid carers I mean family or friend carers who care for people with chronic illnesses and disabilities, despite the fact they often have no training, get no holidays and didn’t sign up for the job in the first place.
I should add that in doing so, unpaid carers save the UK economy billions of pounds per year, some of which gets pumped into the health and social care system to provide for medically legitimised illness, including Covid-19.
Invisible Carers
The sacrifices made by such unpaid carers are incredible, they too sustain losses as a result of their commitment, and their contributions to society (both during and outside of pandemics) are vitally important. Yet who claps for these carers?
I suspect such marginalisation is largely to do with social (in)visibility: the clap for our carers campaign acknowledges ‘all those who are out there’ and who thus contribute to social efforts to navigate through Covid-19.
It doesn’t seem to occur to social majority groups that there are other unsung heroes who really are unsung – not so much ‘out there’ and visible in society, but ‘in here’ and largely invisible within the confines of our four walls.
Such marginalization might also have something to do with mainstream associations with productivity; I wonder how many people with chronic illnesses and disabilities are feeling guilty that they cannot be ‘out there’ making a socially visible difference in a socially acceptable way (or is it just me?).
Of course, I fully acknowledge and deeply appreciate the extraordinary and courageous efforts of frontline healthcare professionals – and the rest of the visible community – in dealing with Covid-19. I also support the clap for our carer’s initiative.
I just wish that it might sometimes be recognised that people such as myself (and people such as my husband who is my carer) actually exist as valued members of society. Using the term carer and applying it across groups within society whilst excluding those to whom the term actually pertains is a very powerful (yet unintentional) way of making those people feel invisible.
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Avoidance and Dismissal
Whilst this article has so far discussed broader social discourse around Covid-19, I want to give an example of how what’s going on at a structural and collective level is influencing person-to-person interactions.
I have experienced this over the past couple of months in how able-bodied friends and acquaintances are positioning me within talk around lockdown. People who have known me (and my M.E.) for over 10 years engage me in venting their boredom and frustrations associated with self-isolating, without acknowledging (although they are fully aware) that I am frequently completely housebound for weeks and months at a time.
Well-meaning friends have recommended I boost my mental health by taking daily exercise, knowing that I am frequently unable to walk to the end of my drive (unless propped up by large doses of prescription painkillers which exacerbate some symptoms whilst taking the edge off constant extreme pain).
Others remind me of the importance of a good night’s sleep, knowing that I have struggled with severe insomnia for 25 years despite having sleep hygiene well and truly covered.
These kinds of interaction make me feel invisible, and yet again I’m aware that some people with M.E. are less visible in society that I am – it really concerns me how such people may feel.
On one occasion I responded to a friend’s text message with a detailed account of what my daily life entails, pandemic or no pandemic. I heard nothing for a couple of weeks, then received a response commenting how wonderfully warm and sunny the weather had recently been.
This, given that my friend knows that heat and sunlight hugely exacerbate my experience of M.E., usually confining me to bed for most of the hotter months. My attempt to explain my daily reality went completely without acknowledgement.
Although I am sure none of these interactions were intended to be disconfirming, I cannot fail to see parallels between these person-to-person exchanges and broader societal responses to experiences (including losses) of people who don’t fit the mainstream mould.
Essentially, avoidance or dismissal of such experiences, or else distortion of such experiences until they fit the mainstream mould to a degree where they don’t cause mainstream society too much discomfort.
Community?
Looking to the future my hope is that, if anything positive can be gleaned from the human suffering and loss of life associated with Covid-19, it might be that societies wake up to the glaring health and social inequities that contribute to the daily struggles and losses of their less privileged members.
My hope is also that societies start to integrate, listen to, and learn from, socially marginalized persons in order to address these inequities. This pertains not only to marginalization on grounds of chronic illness and disability, but also on grounds of gender, age, race, ethnicity, sexual orientation and economic disadvantage (and particularly where marginalized identities intersect).
This would be a true measure of community, solidarity and #WeAreInThisTogether. And yes, I am suggesting that there is a certain amount of irony in the bandying around of terms like ‘community’ when some of society’s more vulnerable members are not treated like equal members of this purported community.
Indeed, it appears that marginalised people risk becoming still further marginalised in global crises, which to my mind is the antithesis of community. People who know best how to fix things are generally those who suffer most from them being broken. What will it take for mainstream society to remove its blinkers?
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