HNPP · Mental Health

How HNPP can cause isolation

HNPP hereditary neuropathy 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.

HNPP · Mental Health

Things you shouldn’t say to those with HNPP

HNPP hereditary neuropathy illness what not to say

This was the subject of another article for those with multiple-sclerosis and it seems totally relevant for those with HNPP! It can be rather irritating for those with hereditary neuropathy, which can be an invisible illness for many, to hear people’s responses in a bid to stop the uncomfortable silences. But why do people feel edgy and how can we help stop the unwanted questions and replies.

To be fair, this seems to be the case across the spectrum for those with mental and physical health issues. Scope, Britain’s leading disability charity, conducted a survey into attitudes to disability, and apparently 67 per cent of British people feel so awkward around disabled people they either panic or avoid all contact. So what can dispel the awkwardness?

Disability blogger Goldfish explains that ‘awareness’ is not always something to rush towards. It not only creates the idea that a disabled person should be sharing their medical histories at will but creates a relationship between the disabled and the non-disabled that’s unequal, characterised by a damaging, charitable pity. Every ‘favour’ done for someone with HNPP or any kind of disability can be framed as care and take on a special charitable status instead of general eligibility. And that’s where the myth needs to be undone and it seems even more difficult when it’s not obvious.

Nothing less than a cultural and economic shift to full humanity for disabled people will improve attitudes to disability. But in the meantime here’s what not to say.

So what should people avoid saying?

  • You don’t look sick – This is rather an extreme thing to say obviously but with chronic conditions, those around us only see the incremental changes. As chronic illness patient and advocate at the Invisible Disabilities Association, Sherri Connell, says: “The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp.” This can actually set HNPP sufferers back, because it’s difficult enough to live with pain let alone trying to make sure you look a suitable way for the world to accept you.
  • You will get better – Not necessarily. Making the assumption that there will be improvements, which will only be short term with progressive conditions, only sets to ease the mind of those asking. And when we don’t improve and our symptoms even worsen, it is us who are frequently thought to be exaggerating. And as difficult as this is to admit, this maybe the new normal. 
  • I have that too! – One of my favourites – unless you really do have the condition, it really isn’t the same. In an attempt to relate to you, people may compare themselves to you. It’s normal for people to think they can relate to something they don’t quite imagine how hard it actually is.
  • I have a friend/cousin/aunt who has the same and they’re doing great – ummm no. Everyone has an opinion and everyone knows someone who is friends with someone that has a certain disease–and that might be true. But not everyone is the same, and the exact same health condition can affect different people in very different ways.
  • It could be worse – Well of course it could be, but every health condition is a serious health condition. People tend to tell you that things could be worse, that you could have a more serious disease, but no one knows what you’re going through. Having a chronic illness means that you have to deal with it for the rest of your life. The only time comparisons might be okay is when we compare where we are now in this illness and our treatment to where we were when we first got sick.
  • You’re cancelling again Believe me, this is only a last resort. Human beings are generally social creatures, hence cancelling is only so we don’t hurt ourselves further. And the issue with HNPP is that our symptoms can change hour-to-hour. The bottom line is – don’t stop making plans, it’s a postponement not a cancellation.
  • If you need anything… – this is said with great intentions. And it is a lovely gesture. The problem is that it is too broad-ranging. We mean it 100 per cent when we say it. So maybe be specific i.e. I’m going to (supermarket), do you need anything?
  • I wish I could stay home all the time – if only we were sitting at home running a Fortune 100 company from the comfort of our beds. But we’re not. Instead when we are home, we hate ourselves for our inability to do what once was the simplest most mundane tasks. We worry about being burdensome. We worry that we’re being lazy. And we compare ourselves to what we were – we don’t want to be home all day. We miss our active lifestyle.
  • God never gives us more than we can handle – Thankfully I live in the UK so I get this less. But it has happened. It is a bit of a ludicrous statement to make given that according to the National Center for Health Statistics there are 16,235 deaths from prescription opioids every year in the US. As patients feel alone and hopeless, suicidal thoughts often overwhelm them. They’d do anything to stop the pain. So please refrain from such statements, but instead think about communicating and reaching out to stop sufferers feeling lonely.
  • Everyone gets tired – That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses.
  • You’re just stressed – When we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them.
  • Be positive – It’s great to be positive but it isn’t a cure. Sometimes there’s also a level of denial when you overdo it. Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness.
  • Have you tried / you should stop – Unless you’re a medical professional or have some actual experience and knowledge with the condition, suggestions are unhelpful. Someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.
  • All you need is exercise – Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. Those attempting to exercise usually do it as a form of physical therapy as there are so many limitations, especially when certain exercises can worsen the damage.
  • You need to get out more – While a change of scenery is wonderful, chronic fatigue and pain will stop you. That’s it. It also makes them feel guilty for not being able to do something they already want to and are probably trying to do.

The absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness is “I believe you”.

I’m sure you’ve all heard a lot more. Feel free to add your comments!

Follow here if you want to find out more information about the End The Awkward campaign.

HNPP · Mental Health

HNPP and the impact of chronic pain on relationships

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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.

relationships chronic neuropathic pain HNPP hereditary neuropathy

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
HNPP · Mental Health

How to cope with grief and loss with HNPP?

hnpp hereditary neuropathy grief loss bereavement identity

Coming to terms with your new situation i.e. a chronic condition, can be devastating. And for many, getting a diagnosis for HNPP can be that, a life sentence. The idea of having to change your identity can feel like a death, especially if you had tied a lot of your physical life around to your sense of self.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

When Breath Becomes Air – Paul Kalanithi

Not being able to play guitar after 22 years was particularly difficult to me, in which I’ve always referred to myself as a musician, and I’ve always used music as a sanctuary. And for many others it could be their career, the role they have in their family, or the activities that they do.

But are we ‘grieving’?

According to counsellor Andrea M. Risi, being diagnosed with a chronic illness such as HNPP can be analogous to losing a loved one: you! The multitude of losses from a living situation, job to relationships can add up and can negatively affect your mental health.

After a diagnosis it could be days, weeks, months, or even years that you may spend going through the process of grieving. There is no time frame for grief; for some it may be life long. Risi says that’s a normal part of the process.

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

Elizabeth Kubler-Ross‘ classic stages of dealing with dying, addressed in her notable book On Death And Dying, is useful for looking at dealing with chronic illness. The stages she identifies are denial, anger, bargaining, resignation, and acceptance. If you are still in denial you are unlikely to accept a change in your role.

  • Denial – In this stage, many people simply don’t comply with medical advice or treatments because they’re “not sick,” denying the diagnosis to yourself, but also to your family and friends.
  • Anger – you might blame yourself for ‘causing’ the disease, the doctor who diagnosed you, or even friends and family members who don’t have the illness, feeling that they don’t have an understanding. Anger can be expressed outwardly or kept festering inwardly.
  • Bargaining – This stage is full of all the ‘what-ifs’ and ‘if you do this’. You might try to bargain with your doctor so you don’t have to take medicine or follow through with treatment, though in the long-run it will only end up hurting you. Sometimes you may just have to say Que Sera, Sera (whatever will be, will be).
  • Depression – when it all finally sinks in, you might feel depressed, helpless or generally sad.  Depression can cause you to withdraw from others, have constant low energy or make you feel empty and worthless. That being said depression is treatable in the face of virtually every known physical disease.
  • Acceptance – this is when you have come to terms with your illness, founding coping mechanisms, and have learned more about the prognosis. You’ve learned that while you cannot control having the diagnosis, you can control what you do about it on a regular basis.

One thing that I have found is that these are interchangeable on any given day. It can move from anger to denial in the space of an hour so there is no linear process.

Cheri Register writes about trying to find a ‘happy medium’ while searching for an identity and managing to deal with the effects of chronic illness.

  • You can tough it out with too little help / become overly dependent on your doctor and family
  • You can keep your illness a secret and avoid thinking about it / you can discuss it openly and become self-pitying
  • You can ask for help and risk being a burden / be too independent and isolate yourself
  • You can push yourself to the limit and risk getting sicker / you can do too little and be more of an invalid than necessary
  • You can be angry about your illness and then bitter / you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience: Embracing the Imperfect Life)

Hence the key is to find a suitable balance between all of the extremes.

What can you do about it?

Ending this vicious cycle requires a lot of proactive thinking. Debbie Dawson, RN and chronic peripheral neuropathy sufferer, wrote this practical, simple guide that can help you work your way through these questions. Make a list for each of the following situations:

  • Things I can no longer do.” (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
  • Things I couldn’t do before, but can now.” (Examples: Have time to write, spend more time with family and friends, spend time listening to teenage grandchildren, have enjoyable dinners with friends, understand the challenges faced by the handicapped and disabled).
  • Things I do the same as before.”  (Examples: Sit in the sunroom enjoying sunsets, watch educational TV, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
  • Things I can still do, but differently.” (Examples: Go to the mall using an aid, walk the dog with the scooter, write using a thick pen, go on an ocean cruise with the scooter, hunt turkey with help and a blind, go camping with automated equipment, drive – but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
  • Things I can do differently, just not ready to yet.” (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).

(Page 23, “Coping With Peripheral Neuropathy”, Berman, Scott M.D)

Chronic illness sufferers are faced with questions about how they will present themselves and how they will build their life situation. New activities and lifestyle may assist this process and provide a new focus for the energy that was invested in grieving. Developing a meaningful life doesn’t just happen. So here are some ways that might help:

  • Finding new opportunities – It may mean putting time and energy into new hobbies and new relationships or looking for opportunities for personal development or spiritual growth. All of this may be constrained by the limits imposed by illness but you can do this at your own pace, one small step at a time if need be.
  • Thinking about yourself differently – You can change negative self-talk or images of ourselves that are not useful. Attitudes that focus on personal strengths and positive outcomes of the illness experience, rather than limitations, seem to be conducive to moving on with life.
  • Find a network of people – You need to honour your grief journey, nurture yourselves as you grieve your losses and reach out to others to share the burden of loss. This is where having access to a network of people experiencing long-term illness can be so helpful. Feelings can be shared in a supportive understanding context.
  • Talk to specialists – Finding a counsellor can be vital in moving past the grief hurdle. Occupational therapists can help and work with you on adaptive equipment, ways to conserve energy, and other techniques that permit you to do more with your neuropathy.
  • Set small, realistic goals you can meet – your therapists (physio or otherwise) can help you set and keep these aims. If you aim too high, you could fail and probably stop altogether.
  • Knowledge is power – make sure you know your rights, whether they are employment-based or otherwise. Keep up to date with developments in your condition, as well as treat anything else that comes your way (a common cold can feel much worse with HNPP). Don’t trust anything that claims to be 100 per cent workable, and avoid any other dodgy scams.

Everyone is at a different stage, so understanding between HNPP’ers is crucial to get through the process.

Wishing you all health and happiness.