Touch is a privilege

Touch keeps us in touch with others. For me, there are periods when touch hurts because of an unusual condition called allodynia. The medical definition of tactile allodynia is “painful hypersensitivity to mechanical stimulation of the skin”. With allodynia, the slightest touch of rain and shower drops can turn into pins and needles. In times of stress, my allodynia gets worse. I have had periods when I couldn’t be hugged for months because being physically intimate could make my symptoms worse.

Allodynia could be the symptom of many health conditions. I currently have an open diagnosis and feel otherwise very healthy and well. I have a fulfilling relationship and a successful career – I am one of the very lucky ones. For the millions of chronically ill (with multiple sclerosis but also fibromyalgia, osteoarthritis or rheumatoid arthritis) or for those who suffered nerve damage as a result of chemotherapy or accident, light touch can feel like stabbing on repeat.

There is no cure for allodynia. I got excited when I read about the recent discovery of the gene responsible for tactile allodynia. It means that there could soon be creams that relieve topical pain. These creams, however, would work by blocking all sensations. The choice between pain and numbness is not an equal choice.

One does not need to have allodynia to know that pleasurable physical touch is a privilege. Consider same-sex partners who must avoid holding hands in countries where it is illegal to be gay. Or the many couples in long-distance relationships. Or children in care or living in families where hugging is not allowed. The expression of love through touch is mutually charging. Everyone should be able to afford this privilege.

Technologies can enrich the ways partners express affection for each other. Emojis, photographs or videos, can shorten the distance between two human bodies. But while technologies can be touchless, we humans are not. Even on my worst days I was touchable in some areas. The human body is not a pointer-based sensor. We do not need more Kissengers, but technologies that supplement whole-body experiences. Radical innovation can be enabled if we recognise that touch is a spectrum and that different bodies experience various kinds of touch in various ways.

I am very conscious and careful of who and what I touch. I am also very aware that while my body belongs to me, allodynia does not. Like clouds above a wide landscape, allodynia comes and goes. I cannot control it, but I can decide how I respond to it. I look up.  

Addendum: An abridged version of this blog was published on Multiple Sclerosis Community Blog in August 2020.