Loneliness with ME


Illustrated by Amanda Francey

It’s often when we need company the most, we’re too sick to have company.

This is the case for millions worldwide who have moderate to severe myalgic encephalomyelitis (ME).

For the severely ill, it is complete isolation from the outside world, including for those who share a home with a caring family. Any stimuli: light, sound, movement, odours, vibration or touch can deteriorate the health of a person with severe ME. Their bodies simply don’t have enough energy to process stimuli, while already struggling with basic bodily functions such as: blood circulation, digestion and breathing.

For those (like me) who are not bed-bound, but are mostly housebound, often need to retreat to a quiet, darkened room to recover from being in a shared living space. This includes having to withdraw from their closest family or dearest friends. Many people with ME have difficulty talking on the phone or connecting through social media without exacerbating their symptoms.

How does social interaction affect me?

I’m fortunate to have a loving family around me. I live with my husband and three teenage children, but I have to retreat to my room so often to recover. I long to have connection, but it makes me feel worse. I long for a quiet house, but I also long to be with my family. It’s such an isolating feeling.

I enjoy catching up with my friends and I miss them all dearly. Whenever I imagine seeing them, I imagine myself healthy and normal. This is how they probably see me on the surface, but in reality, I feel quite unwell.

I’ll be animated for the first half hour or so due to the excitement and adrenaline of leaving the house and seeing friends. However, this is quickly swept away by a wave of extreme exhaustion, hot flushes, heart racing and the inability to process conversation as my brain grapples with sensory overload.

All of these things I could handle without a thought before developing ME. But now my energy dives into the red zone without warning and I can’t block out anything without blocking out everything. When it reaches breaking point, I must leave immediately and endure the nauseating vibration and dizzying motion of the car ride home.

I never last more than an hour or two when I’m out. Instead of relaxing and enjoying myself, as I normally would do, I spend every scrap of energy attempting to follow the conversation and talk without muddling or slurring my words. If I stay too long or I push myself to socialise while my body’s in ‘crash’ mode, it can deteriorate my health for weeks or longer.

I’m devastated I have to miss out on many things in life, but I have to make these sacrifices, so my health doesn’t worsen to the extent of missing out on everything. I appreciate my friends very much and hope they continue to invite me to things.

What if your family or friends don’t understand?

Another level of loneliness can be misunderstanding from friends and loved ones. The main contributor to the misconception of ME is that it's commonly known as chronic fatigue syndrome. This unfortunate name skews a serious, multi-system disease into a vague syndrome conflated with ‘ordinary fatigue’. 

Everyone at some stage has been sick or had a bit of ‘healthy fatigue’ and recovered, so there can be scepticism as to why some people don’t get better. 

Despite how loving or well-meaning a person is, their 'comparison gauge' is limited to their own experiences, which brings me to a quote by Matt Kahn...

"People can only meet you as deeply as they've met themselves."

Well-meaning loved ones or friends will want to help, but this may come in the way of trying to fix things rather than support. And there can be an instant suspicion if you don’t try someone’s unscientific cure-all remedy such as: celery juice, thyme tea or essential oils. Many of us have already tried every diet protocol, supplement or therapy going around and some can actually be harmful. For me, just being in the same room as a bottle of essential oils can trigger migraines and vomiting for hours on end.

For those who remain sceptical of the severity of this disease, there’s plenty of evidence to show them, revealing ME patients have trouble generating energy from a cellular level, plus studies show brain inflammation, autonomic and immune system impairment. It’s impossible to see these multiple systemic dysfunctions from the outside, with the exception of very severe patients who may be emaciated due to gastrointestinal paralysis. Some very severe patients require tube feeding, but their nutritional needs aren’t met early enough because hospital staff don’t realise ME can cause gastroparesis. They’re often sent to the psyche ward and mistakingly treated for anorexia nervosa.

Severe patients are rarely seen by society or medical clinics because they’re bedridden, and most doctors don’t offer house visits. This is why many doctors have little experience with understanding the severity of this disease. ER doctors don’t know what to do with severe patients when they arrive by ambulance, which can have fatal consequences. A few days ago, I was in communication with a woman who was grieving the loss of her 27 year old daughter. She said every hospital admission deteriorated her daughter's health. 

Doctors who are dismissive of their patient’s debilitating or worsening symptoms, can influence the attitudes of the patient's family and friends, which magnifies the feeling of isolation.

I'm surrounded by people who try their best to understand and support me, including my doctors. I wish more people with ME were as fortunate as I am. To have a chronic debilitating illness compounded by people who don't understand, or worse, don't believe you are as sick as you really are, would be incredibly hurtful. My heart breaks for them.

Illustration and video by Amanda Francey | Music by https://www.bensound.com

How do I cope with loneliness?

I feel loneliness quite often, but with more practise accepting this feeling without expanding on it with self-judgement, the better I’m able to cope with my situation. I allow myself to be aware of my emotions without forming a narrative. I do this by creating a non-judgmental space between my emotions and my thoughts.

For example, when my emotion is sadness, I’ll sit with it and observe it for what it is, like I’d observe the sound of a plane flying over my house. I don’t follow the plane. It flies over and eventually disappears from my awareness. The same thing happens when I allow myself to be aware of my sadness. I don’t follow any thoughts or create a narrative around it. My sadness hovers over me for a while, then disappears again.

I picture in my mind’s eye where I feel the sadness in my body and I calmly breathe into that area and imagine sending love to it. I think of all of the people in the world who are going through something similar to me and imagine sending love and compassion to them also.

I’d like the believe love is like a boomerang. When you send love out into the world, love always finds it’s way back to you. You don’t need to be a religious person to believe there’s a power in love. Love can be felt in ourselves and it can be seen in the actions of others. There’s no denying love is real.

Sometimes I’ll picture the face of a person I love dearly and I imagine sending a bright loving light to them. This also gives me a sense of connection and healing with it. I feel less alone.

When I can tolerate it, I’ll reach out to my family, friends or fellow ME patients via texting, email or social media. Even sending someone who I think may need it, a hug or a heart emoji, can give me a sense of connection and can make that other person’s day much brighter, without completely wrecking myself.

We are forced to become our own companion and we need to be the best companion we can be by practising self-compassion.

Along with millions of people with ME, I desperately await effective treatments to help me return to ‘life’. In the meantime, I’ll just have to cope with loneliness the best I can.