HNPP and the impact of chronic pain on relationships

There are days where you just want to curl up in a ball and stay away from people, especially when you’re suffering from chronic pain from HNPP. Or generally hate the world for not understanding why you want to be alone or just basically recognised. The impact of one person’s neuropathic and chronic pain can produce a ripple effect on the people around us.

The problem is our connections with others whether they are friends, family, colleagues or acquaintances, make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

The science behind the breakdown

According to a 2008 study by Professor S. Jose Closs based on how neuropathic pain can effect relationships, most research in this field has not differentiated between those who have chronic nociceptive pain (pain caused in response to injury or pathology) and those who suffer from neuropathic pain symptoms due to abnormal nerve function.

Most treatment is pharmacological, and little is known about people’s experiences of symptoms and how they affect daily life despite 8 per cent of 3,000 people in the UK claiming to suffer from it. [1]

The research found that participants said strains were placed on relationships within their families and intimate relationships. They also described difficulties in maintaining, as well as losing connections with friends. Not to mention the frustration in their dealings with uncomprehending healthcare professionals, disability services, benefits agencies and employment services, which was common.

For the male participants, some felt that they were unable to perform traditional male tasks and fulfil their roles as sons, partners and fathers. These included heavier household chores such as gardening, being able to protect their loved ones. While for women, a few described their inability to perform their usual roles and participate in normal family activities. The impact on children was particularly noted. As a result, sufferers behaved aggressively or became quite negative out of frustration. [2]

Some reported not having the emotional energy to deal with other people’s concerns, and expressed how they had become resentful towards others who relied on them. It can be seen in these terms:

• Loss of family roles
• Social withdrawal
• Being believed / understood

The nature of the disability resulting from neuropathic pain is further complicated by the invisibility of pain. And if you’re like me, who tends be rather independent, you fall further into isolation.

What can be done?

Part of pain management involves accepting these changes and using them to form better and closer relationships with the ones you love. By learning to better cope, you will be able to manage pain and keep friends and family close.

• Find a communication balance – The people in your life need to know how you are feeling. Staying silent will only cause them to feel estranged from you. But try not to overwhelm them by sharing too much. This is where a happy medium needs to be struck.
• Discuss your sexuality with your spouse – Make plans for encounters that fit into your medication schedule and the ebb and flow of your daily pain.
• Don’t let chronic pain keep you from interacting with friends – “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author, Toni Bernhard. Bernard says to make an educated guess and hope for the best, but don’t push yourself too much, but at least give enough notice if you do end up cancelling plans. Keep in contact, however, in the best way that you can.
• Take on manageable household responsibilities – If you find yourself unable to perform certain chores that were once your responsibility, replace them with new tasks that you are able to perform. This will keep you an active and contributing member of your family.
• Ask for help – Giving your loved ones a chance to help you in some way can make them feel closer to you. Asking for help is never a sign of weakness, instead it allows others who feel helpless to understand how they can assist.
• Be compassionate to yourself – Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself or a young child, without judgement, without criticism, without drama. As author Jack cornfield said, “If your compassion does not include yourself, it is incomplete.”

For persons with chronic illness and/or disability, everyday relationships and support processes are central to understanding the meaning of illness, but the particularly compelling portions of this story are the commitments and successes in re-negotiating relationships.

As Renee Lyons writes in Personal Relationships, Illness, and Disability: “Illness and disability do not merely comprise a sad person’s story, but an opportunity for intimacy and collaboration in relationships – an opportunity for community in the truest sense.”

• 1. Page 403, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
• 2. Page 405, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
• Recommended reading – Personal Relationships, Illness, and Disability, Renee Lyons