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.

6 thoughts on “How to cope with grief and loss with HNPP?

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