How HNPP can cause isolation

After reading The Lonely City by Olivia Laing, it brought up the question – are some with hereditary neuropathy and HNPP living in isolation? Of course many live by themselves and do not feel lonely, while others with HNPP are managing fine, but chronic and invisible illnesses can become isolating, whether overtly or more insidiously.

“Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective.”

David Biro M.D.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations.  For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life -excuses a plenty.

This isolation turns into loneliness. Guy Winch, a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post: “Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 per cent of adults over the age of 65 will experience loneliness.

“Indeed, the 2010 U.S. Census found that 27 per cent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”

Why do we isolate ourselves?

David Biro MD, author of Listening to Pain: Finding Words, Compassion, and Relief, also suffered from isolation from depression. He said: “Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness. That goes for physical pain as well as psychological pain.”

He adds: “Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”

It’s not the same as dealing with a broken leg, it heals and the person returns to life as usual in most cases. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, a leading authority on grief and loss.

And when you combine a sufferer who sees only their own pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. Hence in order to stop the isolation, you have to break down the wall that stops communication.

Tracy Rydzy, a social worker with chronic pain, said: “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.

So how do you break the barrier?

• Make the pain communicable – figure out ways to make the pain shareable – through words or pictures or whatever other kinds of language can be summoned for the task.
• Reconnect with friends and family – being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.
• Regular connections – use messages, emails, texts to stay in touch every day, whether it is Facebook, WhatsApp, or any other social media.
• Arrange social activities to fit your needs – invite people to your home, or go somewhere accessible to you. I find when friends come over bringing one dish each can be sociable and helpful at the same time, or watching films with your friends at home. Negotiate your social activities.
• Ask for help – if you do go out for example to the theatre, ask if they can accommodate you, and you explain your situation. In the past, they have given me seats while waiting outside, or areas to lie down during the interval.
• Create spaces that fit your needs – making Facebook groups, speaking to others on Twitter, and even create a MeetUp group with similar needs can actually bring new people together. It takes a little productivity and initiative to get out of the funk.
• Make the most of available aids – in the UK, we’re lucky in terms of certain benefits that can be utilised such as the CEA Card for those who want to take someone to the cinema with them; or a Please Offer Me A Seat badge for those with hidden illnesses on public transport. You can find out more here. It is worth checking what you have available in your own country and states as some provide special Leisure Passes in certain areas.
• Speak to your medical practitioner – Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health. They may be able to forward you information about groups, and counselling.

At the end of the day, you need to put your physical health first, so don’t feel guilty for taking some time away. But your mental health comes a close second, so put yourself first either way.

• Invisible Disabilities – large social network
• HNPP Help – Facebook group
• HNPP and CMT Neuropathy Support – Facebook group
• MeetUp – Find different social groups to fit your needs