The Personal Cost of M.E./CFS
Myalgic Encephalomyelitis (M.E., also known as Chronic Fatigue Syndrome or CFS) is a long-term, fluctuating, neurological condition that affects many body systems, most commonly the nervous and immune systems[1]. Common symptoms are: debilitating fatigue, headaches, cognitive difficulties, digestive issues, muscle pain, nausea, dizziness, tinnitus, flu-like aches, and poor temperature regulation, though there are many more and varied ways this illness affects people.
M.E. affects an estimated 250,000 people in the U.K.[2]and 17 million people worldwide[3]. A 1996 a study found the approximate annual economic cost to the nation from lost income, benefits and health costs was £3.5 billion[4]. However, perhaps more devastating is the cost to sufferers themselves, on both a financial and personal level. They suffer a significant loss of their quality of life; the illness can damage relationships and tear families apart. Many sufferers will lose friends, partners, and family members as a result of the strain the illness puts on these relationships. Their relationships can also be greatly impacted by lack of understanding and disbelief from those close to them. Initially friends and family may be supportive, but as time goes on and the illness continues peoples’ patience begins to wear thin, and all but the most committed gradually drift away.
Most M.E. sufferers are forced to stop or significantly reduce their work or studies, and with that comes the loss of everyday interpersonal relationships. Whilst the idea of not working may sound like a dream to many, the financial pressure and loss of self-worth from not being able to generate an income can be overwhelming. Most people wouldn’t choose a life where they are reliant from support from others, or the state to survive. Those who are fortunate enough to have people who can support them often suffer from guilt and feelings of uselessness. In addition, the stress and upset caused by trying to obtain state benefits often makes sufferers worse, and the amount received is hardly worth the turmoil.
Having been ill with M.E./CFS for about 2 years, I’m still relatively new to the experience. I have been fortunate to have a supportive partner, family and friends. Despite this, I am lonely. I am mostly housebound and unable to work, so I spend most of my time alone. I find it hard to form and maintain close relationships because social situations are exhausting for me, and I struggle to know what to talk about with friends. It can make me sad to hear about the busy and exciting lives my friends are leading, as I am unable to do so myself, and I don’t want to talk about my illness all the time because I don’t want to become someone who only ever complains. I rarely see friends and family because I always suffer for it afterwards, and I find often people struggle to understand my needs and adapt to enable me to join in with activities without severely impacting my health.
This has all meant that my relationships have weakened over the course of my illness. The illness has also put a huge strain on my romantic relationship. As I am unable to keep up with our peers, it has meant that my partner and I are limited in what we can do together. This has slowly degraded our relationship over time, and while we still love each other, it has put our future together into question. I don’t know how long I will be ill, or if I will ever recover, and so it has put my partner and I into a difficult situation. We have aspirations for our lives, and at present they are not possible for me. This means my partner has to decide if he is willing to potentially give up these dreams for me, and I have to decide if I want to risk holding him back from the life he wants to live.
I have spoken to a few other sufferers to gain insight into their experiences with this life-shattering illness.
Jack is 56 and was first diagnosed with M.E./CFS in the mid 90s.
At the onset of his illness he started falling asleep at work, at friends houses, and at many other inappropriate times. He was forced to stop all the physical activities he used to do, going from an active young man who would go cycling, take walks and do martial arts, to someone who got tired on the way to work. His career suffered and he would go from job to job, reducing his hours each time as employers told him he was taking too much time off. He was earning less than his outgoings, and was eventually fired from his job 5 years ago. He regrets prioritising his work, as he believes that contributed to his declining health. His GP has now told him he may never work again.
He lost a few short-term relationships because of the illness, but he also lost a long-term relationship, which he still regrets to this day. He went out and fell asleep, not waking until the next day, causing his partner to believe he was having an affair. He has lost all his friends over the years, as his illness prevented him joining in activities, such as going to the pub. He now has social services support around the house, and one of the roles they serve is to help him get out for a coffee, or the cinema, etc. Before he had this support he could go months without seeing anyone other than his daughter. He still has issues with not being able to support his daughter at school and be there for her in the way that he would like. Despite having worked in social care and being experienced in disability, he has found it a nightmare getting the support he needs from benefits and social services. He describes the social isolation of M.E. as one of the worst aspects of the illness.
Despite all he has lost, he remains hopeful for the future, “[I] would like to think I will have another relationship, [I] miss female company and intimacy”.
Jack also has some words of advice for fellow sufferers. He says that having a supportive GP is important, and encourages others to press for social services support. A psychologist once told him that the biggest hurdle he had was to accept he was disabled, and to recognise his limitations and all the lack of status that entails.
Claire is 48 and has had M.E. for 13 years.
She met her partner 15 years ago. They had many shared interests including cycling, yoga, hiking and traveling. A year and a half later she caught the flu, and six months later came the diagnosis of M.E.. After two years, as her health continued to deteriorate, she had to give up work.
Over the ensuing years her health became worse and worse, and she was no longer able to join in with any of the shared interests that she and her partner used to once enjoy together.
She has mixed feelings about her relationship. Whilst she is eternally grateful that her partner has stuck by her for the 13 years she’s been ill, she also feels guilty at how much her partner has lost out on because of her ill health. She enjoys the company and intimacy of the relationship, especially when she is too unwell to go out or see friends, but her feelings of guilt mean that she has at times overcompensated by doing as much for her partner as possible, sometimes to the detriment of her own health.
About a year ago her partner had a fling with someone else. That was a particularly difficult time for her, and it really made clear the devastating impact of her M.E. She felt that she could fully understand her partner’s desire to be with someone well and energetic, and it brought home her limitations and how much the M.E. has impacted her life.
Now she and her partner find that their lives have taken radically different directions. He likes to go to all night parties, whereas she rarely has the energy to see friends. He enjoys going to festivals and on holidays with friends, but she can only very rarely leave their hometown. They still deeply care about each other, but it's become hard for them to see how their future together will look. They've been discussing the possibility of having some time apart to decide on what they both want.
Katrina is 28 and has had M.E. for 5 years.
For her it started after having the flu. Doctors told her she was feeling unwell due to stress, as she was planning to get married in 6 months time. She has been ill for her entire married life.
At the time of falling ill she had just started a PhD on a very competitive doctoral programme and was having lots of troubles with her supervisor. She was accused of fabricating her illness, whilst her struggles with M.E. forced her to reduce her hours and eventually move to part time. The illness completely changed what she was meant to be doing, preventing her from carrying out fieldwork and ruining her plans to go out to China for her studies. She says, “I don’t think anyone at university understands my illness and as a result I keep to myself, and have not made any friends”.
As well as missing out on making new friends, she has also lost a lot of existing friends due to her M.E.. She hasn’t talked to her “best friend” since the day she got married, as she didn’t support Katrina through her illness. Before she fell ill they were inseparable but their friendship could not withstand the illness.
However, she is grateful that her husband has stood by her through everything, the good and the bad. She also considers herself extremely lucky to have had the support of all her family during this difficult time.
Jaymee is 31 and was diagnosed with M.E. in 2015 when she was a second year student nurse.
She’d had several bouts of tonsillitis in a short space of time, and she felt she just couldn’t get enough sleep and didn’t ever feel better. The illness forced her to give up her career before it even started. Due to her condition, she ended up in a wheelchair and, as she lost the use of her legs, she had to learn to walk again.
She feels very lucky to have a man who has stuck by her; she says “[He] understands M.E. and myself better than I do! He is my rock!”. Unfortunately, however, her friends and family don’t understand at all and think that she should be pushing herself, despite her trying this in the past and it not working.
Finally, I spoke to Liz who is 44 and has been ill for 3 ½ years.
She fell ill while on holiday and never recovered. Before this she was a sporty, active person who played tennis, softball, went running, went to the gym regularly, and socialised quite a lot. She had also been working full time as an accountant at Lloyds Bank in a senior management role.
Her life has changed considerably because of the illness. She had to give up playing all sport and as a result, lost many friendships. She says, “It was hard to do, giving up the sport, my social life was intertwined with it. I spent many a weekend away with a group of people playing softball and to give it all up was very depressing.”
She found that initially people were good at keeping in touch, but as time went on it became more difficult. She could see the life she had lost, but her friends’ were moving on. When together, they would be discussing weekends away, people, and experiences that she had not been able to share with them. She felt very isolated, as her friends didn’t understand what had happened to her, and she couldn’t explain it to them either.
Her work relationships experienced a similar strain, however in some ways she feels they have been more understanding as they can see that she struggles on a day-to-day basis. As a result she has formed a really close friendship with a colleague with whom she now job shares (both working 24.5 hours a week). She feels she is able to share with her if she’s having a bad day and can’t manage, as well as sharing her anxieties.
She has also managed to develop some existing relationships since being ill. She says, “True friends understand when you are too tired to meet and cancel at the last minute”. In addition, she has also made new friends through the M.E. support network[5], which she has found to be great for sharing advice and support.
She is feeling optimistic about the future and has recently started a new romantic relationship. It has been tough on him and she has had to educate him about M.E.. She shares with him when she’s not feeling good and has explained how she has to manage her energy levels. It has tested her limits at times, but she has been able to arrange her pacing to allow herself enough time to recover so she can spend time with him when she’s well enough. Despite the challenges, she feels the relationship is going well, and they are starting to make long-term plans together.
M.E. is a cruel and life-altering illness. Sufferers find themselves becoming increasingly more isolated as time goes on, sometimes ending up completely alone. Their relationships crumble, through no fault of their own, but from the strain M.E. puts on human interactions. And, the more alone we are, the more invisible we are to society, resulting in less understanding of this horrible disease.
Despite this, sufferers manage to show amazing inner strength and resilience. Where many would descend in to hopelessness, they keep going and remaining optimistic about the future. As well, many friends and family of people with M.E. manage to be incredibly supportive and loving throughout the challenges faced by them too.
Those who’ve had family, friends and partners stick by them consider themselves lucky, but isn’t love and support a basic human need that we all deserve? Unfortunately there are many sufferers who don’t get the care they need or deserve due to the stigma and misunderstanding that surrounds M.E.. It is my hope, that with better understanding, people who endure this condition will receive better treatment from those close to them, from doctors, and from the government.
Please note: Some details have been changed for anonymity
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