"The proportion of disabled people (13.9%) aged 16 years and over in England, who reported feeling lonely “often or always” was almost four times that of non-disabled people (3.8%). [Source: Office for National Statistics – 2020]" - Disability Discrimination In The UK - Politics.co.uk
So the past 5 days I have been trying to process why I have been so emotional. I’ve cried 3 times. Not little cries, full blown sobbing. I’m not someone who cries often. Not before I got ill, before I got ill, I was the type of person who cried when they were angry. Then I suddenly became someone who cried at films, maybe once a month when my hormones were messing with me.
I worked out what it was. I felt lonely. I recently went to my GP about my mobility and my memory (now this is the same GP who is open about his lack of understanding in the condition). They checked my lungs and did a dementia test. If I had realised that’s what they were going to do I could have told them. I used to work in a dementia care home before this condition stopped me. It’s not the same type of memory loss. I have moments, even entire years of memories that I can’t remember. More recently, it’s events, things to put on the shopping list. I’m forgetting that I went to the cinema to watch a film, or that I saw someone a few months back. I can barely remember anything from the past few years. The memories that are disappearing are the good ones. The ones I’d like to stay. Anyway; they said they would wait for the specialist. But it can’t wait, I need help before I can no longer work or leave the house. I’ve managed to book an appointment with another GP but I have no idea if they will be able to help.
There are a few reasons that I’ve been emotional recently. The first reason is, I feel alone. It sounds silly, I have a couple of friends that have similar conditions to me that I talk to, I have my fiance who comes home and spends a few hours with me before I get in the bath and go to bed and spends weekends with me.
I know that I have social media and people I could talk to, but in the end. No one with the same chronic illness presents the same. We all have different experiences. Which means, even though it’s reassuring to have people who understand, they also don’t. Which makes it quite isolating. It doesn’t help that social situations exhaust me. The reality is sometimes replying to a message is too much pressure, a conversation is usually entailed and I don’t always have the social battery.
One way to combat this I have found is to set up a system with a few close friends of mine. We pick a specific colour 🖤 emoji and when we can’t talk or don’t feel well enough too, we know it means that the other wants to talk but can’t quite handle it right now. It’s great and is good not just for people with chronic illnesses, but as a way to set a healthy boundary with those were close to, such as family and friends and loved ones. The important thing to remember is it needs to be a specific colour that neither of you will use in a general conversation. It should also be just the heart on it’s own and should be agreed with the other person so that they know what it means. We know it means that the other wants to talk but can’t quite handle it right now. It’s great and is good not just for people with chronic illnesses, but as a way to set a healthy boundary with those were close to such as family and friends and loved ones. The important thing to remember is it needs to be a specific colour that neither of you will use in a general conversation. It should also be just the heart on it’s own and should be agreed with the other person so that they know what it means.
So what prompted me to realise it was loneliness? A friend and myself both play animal crossing when we are well enough. She doesn’t have ME/CFS but something else similar. She sent me this article;
https://lastwordongaming.com/2022/05/09/malana-animal-crossing/
It is a great read about someone who was diagnosed with ME/CFS just before lock down and downloaded animal crossing. She found it really helped combat her loneliness and boredom. She then set up an ME/CFS awareness island. The details are in the article and I encourage you to read it.
It made me realise and reminded me of why I had been doing the posts this month about Fibromyalgia and ME/CFS. The reality of these conditions is often bleak. There is no cure or treatment, they treat the symptoms not the condition which is why so many people with chronic illnesses end up on so many medications.
There are around 17 - 24 million people with ME/CFS world wide. (Ammes.org, 2022) So how many people in the UK actually have ME/CFS? 265,000 people in the UK live with ME/CFS. (ME Association, 2022)
Turns out, there isn't a lot of research on ME/CFS and loneliness. Nevertheless, Boulazerg & Rokach (2020) looked at the psychological affects of ME/CFS. One degrading aspect of ME/CFS is actually peoples lack of understanding or belief in the condition (yes. I do mean belief). Bill Clayton from The York ME Community states:
"My un-researched view is that loneliness is down to restrictions placed on you where you’ve had no choice in the situation." - ME Association (2019)
Bill goes on to state that loneliness means different things to different people. The impact ME/CFS has, is that you go from a budding social and work life, to having all of that taken away. It's not an immediate change, its a gradual reduction of contact from those around us due to "no longer fitting in with their social pattern." (ME Association, 2019)
“From the start, the conceptualisation of ME/CFS as an illness has been riddled with controversies and dismissiveness from the medical community. Initially deemed to be psychosomatic in nature [7] and as epidemic hysteria [8,9], this mislabelling has persisted to this day, leading researchers to make observation that the medical community continues to harbour “prejudiced opinions that it is not a real illness” [10] (p. 309).” Boulazerg & Rokach (2020)
This is known far and wide by the chronic illness community. Medical trauma is a large problem and I am yet to meet someone with a chronic illness who does not have any.
They then go on to explain the impact the condition has psychologically.
“sufferers of this disorder typically also carry with them a myriad of negative non-physical consequences affecting anxiety, depression, and overall well-being [14].” Boulazerg & Rokach (2020)
An aspect both of ME/CFS and Fibromyalgia, as well as other conditions is chronic pain. Chronic pain can vary from headaches, migraines, nerve pain, muscle pain, bone pain, burning, aching, shooting pain and more. Individuals with both conditions often struggle to describe the pain and the impact it has. The study found;
“The presence of chronic pain can have devastating effects on one’s psychosocial functioning. In fact, when it comes to chronic pain, some researchers consider the accompanying psychosocial distress to be so severe in magnitude that they advocate for a dual-diagnosis—one that includes a component on pain severity while also emphasizing the debilitating function of one’s social environment.”Boulazerg & Rokach (2020)
This will have been no surprise to anyone, with Fibromyalgia, ME/CFS or any other chronic pain sufferers. It is something that the chronic illness community has been trying to tell the medical community for YEARS. However, due to lack of funding for research into any of these chronic illnesses means that these suffers are often labelled as “druggies who are just trying to feed an addiction.” That statement in itself is toxic and problematic and anyone with that belief should not be in health care in any form. The reality is both addiction and chronic pain are disabling and all-consuming real problems, which should be treated as such in an appropriate and respectful manner.
So what about the psychological affects of ME/CFS? What did their research inform us?
As someone who has had clinical depression 10 years and was diagnosed with anxiety (another medical traumatic experience where my symptoms were belittled) prior to ME/CFS. Their research found that ME/CFS, depression and anxiety aren’t actually separate or “comorbid” as they explain. (Boulazerg & Rokach, 2020)
“review of the neural pathways affected by ME/CFS and depression found that these two conditions do not exist independently of each other; instead, they are manifestations of similar damaged neural pathways. Thus, rather than using the term “comorbid,” Maes [28] advocates for the identification of ME/CFS and depression as “co-associated” disorders. This linguistic distinction, though small, may benefit the ME/CFS community through earlier mental health intervention, as healthcare professionals would be vigilant of depression from the outset of diagnosis.” Boulazerg & Rokach (2020)
I can safely say any anxiety I have is surrounding my condition, not necessarily my health as a whole, but the impact my condition has. So I might worry that doing something will cause a flare up. I also worry about the impact it has on those around me, particularly my fiancé. I worry the impact of seeing me sick for so long has had on him mentally, emotionally and physically. This is highlighted in the article and called a mixture between “catastrophizing” and “kinesiophobia” (Boulazerg & Rokach, 2020)
“A common reason why mental health issues are high with patients with ME/CFS is the frequent observance of kinesiophobia (i.e., a fear of movement, [29,30], which may cause withdrawal and isolation from one’s social circle due to the strenuous efforts of displacing oneself. Another common observance in ME/CFS individuals, which is devastating in tandem with kinesiophobia, is the act of catastrophizing [31,32].” - Boulazerg & Rokach (2020)
“Catastrophizing, defined as the general tendency to assume that the worst-case scenario will happen, presents challenges for the overly cautious ME/CFS sufferer. Pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an attempt to protect themselves from potentially negative exposure. However, this approach to confine and stay away from social and recreational pursuits is counterproductive; in fact, studies investigating the implications of social deprivation have shown that it instead increases pain perception [33,34].” - Boulazerg & Rokach (2020)
Which is all well and good, but when you’r e the person who is suffering because they leave the house and go to buy food shopping or because you went to see a friend. It’s easy to become scared of the impact of even the slightest of activity. It should be noted that this is not referring to pacing of activities etc, but rather not doing them due to fear. My interpretation of this was that they were not encouraging individuals with ME/CFS to participate in activities when they were not well enough. But rather to participate in these activities where they could (such as the NICE guidelines). This obviously looks different to everybody, to some it may be the occasional message on social media, where as to someone more mild, it may be going out to see a friend or having them over for lunch.
I haven’t covered it in teenagers but the link is at the bottom of the article so please feel free to read it! They estimate around 0.11 to 1.9% of diagnosises of ME/CFS are in adolescence.
So what do they say about ME/CFS in adulthood?
Chronic illnesses, in general, significantly affect one’s psyche. As Kiliçkaya and Karakaş [41] stated, “it is known that medical and psychosocial problems in chronic diseases cause negative emotions such as anger, distress, and unhappiness and that patients who have chronic illness feel loneliness. Hospital stays, taking medication, physical and social loss of function, economic setbacks, a changing body, and uneasiness in social relationships are factors that affect loneliness” (p. 486). - Boulazerg & Rokach (2020)
Finally, they gave loneliness its own section (3.2). So how do ME/CFS and loneliness relate to one another? They explain that:
”Loneliness, unlike solitude, which will soon be described, involves excruciating physical and mental suffering.…….Loneliness can be a reactive experience, that is aroused in response to a significant life change or loss, or it could be an essential experience which stems from one’s infancy and is intertwined in the individual’s personality [52]. Apparently, it was found that loneliness may have a significant or even profound impact on the brain and can affect reasoning, memory, hormone homeostasis, blood glucose levels, and one’s manner of addressing of physical and mental stresses and illnesses [53].” - Boulazerg & Rokach (2020)
They go on to explain that “Loneliness is a universal experience.” As well as “loneliness is .. an influential experience in the progression of illness.” They go into great detail about what loneliness is and the impact it can have. However, one thing stood out for me in relation to ME/CFS in my personal experience and for chronic illnesses like ME/CFS.
“If patients perceive that the situation is beyond hope, they may not seek treatment. However, if they believe that the treatment can help or even cure them, they will actively and even aggressively seek to achieve healing.” - Boulazerg & Rokach (2020)
This statement, whilst helpful for someone with high blood pressure (the example they use). This is not helpful for those with ME/CFS or Fibromyalgia because these are conditions often seen without hope, not due to the individuals point of view but due to no cure, lack of belief and understanding and overall view of the condition both by the population and medical professionals due to lack of funding and research into the conditions.
To conclude, although I agree with many of the points within the research, there are issues which need addressing and show that even those conducting research into conditions like ME/CFS do not fully understand the severity, reality or impact the condition has on those with the diagnosis and those close to them, physically, socially and mentally.
Sources:
Boulazerg & Rokach (2020) The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PMC (nih.gov)
ME Association (2019) Loneliness, ME and the benefit of local support groups by Bill Clayton | 21 June 2019 | The ME Association
ME Association, 2022 The ME Association | The ME Association