I have been in a mild, moderate, “on a break” and severe relationship with ME for almost 3 decades. As with any relationship, I have seen the darkest and lightest that it has to offer, as well as the side effects. The lightest side effect is definitely friendship with online people who understand this daily struggle. (What a relief to discover that others also have to adjust to sensory overload, managing communication with voice messages, listening to audio books at 80% speed and also not tolerating the smell of cleaning products, perfume or aftershave.)
The darkest side effect, even beyond the endless pain and horrible, sometimes terrifying symptoms, has to be the loss of those friends from the days of better health.
We know when facing any illness, a network of supportive friends for mental and emotional well-being is essential.
And yet, for many of us, this essential element is missing. Chronic illness is a kind of no man’s land, a territory nobody wants to visit, least of all old friends. Faced with a specific acute illness, it can be very frightening. A diagnosis, surgery, treatment and then hopefully, the slow road to recovery. Friends understand this process and rally round.
With ME and its very long list of symptoms affecting every part of the body, the diagnosis can take years, there is no treatment and no prognosis. A confusing and frustrating no man’s land for everyone.
Then there are the different degrees of illness. When I was mildly affected I would sometimes slip into moderate and then back into mild. In remission, when I had a break from most of it, I thought I was cured. Now I am back in the relationship and classed as severe. Some days are very bad, others are ok ish. Hard to predict and that’s confusing.
Of course, I am not the only one in this situation. Others with ME also face the dilemma of erratic energy and symptoms. And the possibility of PEM or even crashing, that socialising in person or by phone brings. Despite careful pacing, and as much fun as a visit might be in the moment, it only takes a couple of crash reactions after these visits to create huge anxiety for future attempts. Many friends simply cannot understand this and the adjustments needed are sometimes more than they are willing or able to make. Many friends simply drift away. As they move on with their lives we are left with a sense of rejection and loss as well as distressing shame and guilt.
So who would be the ideal friend? For me, a friend who checks in regularly, asking how I am and genuinely wanting to know, just as I am curious to know about their lives. A friend who listens without trying to fix. A friend who wants to support me in my journey and would therefore be willing to understand and help with navigating the energy dilemma. A local friend who asks: How can I help? Who drops off a couple of cooked meals now and then to help my long suffering husband who everyone knows really dislikes cooking! This is the ideal and any variation would, naturally, be welcome.
Meanwhile I am deeply grateful for family and the few friends who stick by me, who do stay in contact and do care.
As for online friends with the same conditions, I could not cope without them. These are people suffering with painful symptoms and limited energy yet with beautiful generosity of spirit, patient listening, warm hearted support and sincere caring. I have never met them in person but they have stayed with me through tears and torment, celebrated my small wins and encouraged me to keep going.
What an amazing community of people who care. Some go even further and set up organisations like Smile for ME to bring a little joy into the lives of people with this illness as well as their carers.
I am so grateful to you all.