A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Sunday, May 29, 2011

Grief and Coping with a Chronic Illness

I have found a lot of support, as well as quite a bit of distress, from visiting a certain on-line Meniere's forum.  Here people from all over the world and in all stages of the disease share their experiences of learning to cope with the unpredictable and often debilitating symptoms we MM-ers generally all suffer: ringing and pressure in one or both ears, episodic vertigo, and progressive hearing loss.

One observation I have made is that we have all experienced the loss of our otherwise normal way of life.  Even for those of us who eventually find something to control the vertigo, there is always the very real fear of it returning at any moment.  This is not exactly an unfounded fear to have and therefore it is virtually impossible to avoid when making plans that might lead us out of our comfort zones.   This might be hard for someone who doesn’t have an unpredictable, debilitating chronic disease, but anyone reading this who also happens to have Meniere’s Disease will know what I mean.

Having Meniere’s Disease results in a certain, and often significant, loss of freedom.  In addition to having the inability to commit to any long-term plans with any degree of certainty, many of us pass through stages of the disease where we cannot even commit to plans for tomorrow, next week, or next month as we never know when we may be curled up in the fetal position for hours at a time, waiting for our world to stop spinning.

This loss of freedom can produce wild, bewildering emotions that are probably not even understood by the person experiencing them, much less by those around them who are watching helplessly.  Everyone knows that someone who has lost a loved one experiences grief, but it is perhaps less common to recognize that loss of any kind actually results in the very same stages of grief that were identified by Elisabeth Kubler-Ross in her 1969 book, On Death and Dying.   I thought I’d elaborate a bit on each stage as I have experienced it since being diagnosed with this chronic illness, as well as what I have observed from a distance through reading about the experiences of others on-line.

The first stage of grieving is denial or isolation.  Once I had a name, a diagnosis, for what I was experiencing, the only natural thing for me to do next was to Google it!  I searched my symptoms repeatedly, in different contexts, in order to possibly fit myself into some other category that could be neatly treated with a simple surgery or prescription drug.  I knew I had Meniere’s Disease, but you always hear about that one-in-a-million person who was misdiagnosed and suffered needlessly.  I certainly didn’t want to be that person.  Yet, everything I read pointed back to Meniere’s and the complete lack of understanding of what caused the condition and, worse, how to successfully treat it.  Reading about the experiences of others was not reassuring at all.  Despite studying the sanitized websites devoted to the disease which stated that 80% of people respond well to conservative medical management and that vertigo typically improved with time, I kept coming across stories of people who did not get better, rather they eventually became completely disabled from complete, or near-complete, vestibular loss.  Initially, I also kept my diagnosis from co-workers and colleagues, fearing it would come back to haunt me.  I was going to get better within the next couple of years, I believed, and I didn’t want this period in my life to keep showing up on my resume.

The second stage of grieving is anger.  Rather than getting angry that I had Meniere’s Disease itself, I got angry that it was stealing time away from me.  I was losing between 15 and 30 hours most weeks to vertigo.  I channeled my anger at forcing myself to do anything and everything I could during the hours and days I was free from full-blown vertigo.  Even during the hours and day I did not have had vertigo, I typically still felt terrible.  My equilibrium was off, my hearing distorted, and I just had a general feeling of physical and emotional exhaustion.  But I refused to let this Stupid Disease take any more time from me than was absolutely necessary.

The next stage is bargaining.  By the time I hit this stage, I was already well-established on the standard low-sodium diet and diuretic regime that is the gold standard of symptom management for people newly diagnosed with Meniere’s Disease.  For me, unfortunately, it was not working.  So Phil and I researched alternative treatments.  I tried antiviral medications, prescribed reluctantly by my doctor, vitamin and herbal supplements, and chiropractic treatments.  All the while I continued to strictly limit salt in my diet and to take my diuretic.  With each vertigo attack, and there were many, many, I couldn’t help but come to believe I just hadn’t been good enough, strict enough at following the treatment du jour.  I was eating too much arginine and not enough lysine while on the antivirals, I must have forgotten to take one of the multitude of supplements I was using, or perhaps I turned my neck the wrong way or slept on the wrong pillow after a chiropractic adjustment.  I thought, “If I just do better, I will beat this.”  I promised myself I would do better.

Depression, the fourth stage of grieving, can suck a person under.  No doubt I experienced it to some degree in the beginning.  Depression and frustration.  Nothing was working and I didn’t want to give up fighting the Beast, but I was running out of options to turn to.  It is depression, I believe, I read that many people on the Meniere’s forum are most struggling with and it really troubles me.  The words “ending it” come up from time to time and you know it is a cry for help.  But the only person you can reach out to is the person crying because their name is something like “Wolverine” or “Mickey Mouse.”  You can’t call their spouse, friend, or even the police because you don’t even know what city they are in much less their address.  To make matters worse, Meniere’s Disease is an invisible condition, so some people report lacking support from their friends and family and instead are accused of faking their symptoms to get out of work and family functions.  It breaks my heart.

The final stage of the grieving process is acceptance.  What a freeing feeling to finally say to myself that I have Meniere’s Disease and that it will probably continue to rear its ugly head off and on in its unpredictable way for the rest of my life.  Yes, I have lost some freedoms, but in the state of acceptance I am free from the fear.  I embrace the ringing in my ear as a normal part of my body now.  I don’t like it, but I don’t like my thighs, either.  In their current state, I can deal with both. 

While I have not had a severe vertigo attack for four months now, I did learn to power-meditate through them in such a manner that was, in a weird way, liberating.  It was like climbing Mount Everest and being cold, miserable, and bleeding the entire struggle to the top, but yet the beauty at the peak of the mountain made the journey (almost) worthwhile.  I also know from experience that the passage of each stage can be fleeting.  I can take several steps backward with each little setback.  I don’t take my current state of relative comfort for granted, but I am also not trying to waste a moment of it on worry or fear over something in which I have no control.

Reading the experiences of others on the Meniere’s forum, I have observed each of these stages being expressed by the various posters to the site.  Sometimes it is clear which stage a person is going through, sometimes not.  I have had the privilege of watching some navigate through each stage and come out the other side an “expert.”  But all too often it seems to me people are getting stuck in one of the stages and are really struggling to move forward in the process.  Sometimes it is anger, other times it is bargaining (typically the newbies, like I once was), but the most disturbing to me are those drowning in depression.  I worry the disease has won, taken over a precious human life.  They seem to no longer be able to see the forest through the trees and have lost hope for finding their new normal.

Based on my experiences so far with Meniere’s Disease, I have come to believe there is little I can do to control the course and symptoms of the disease through any action of my own.  I could never nail down a trigger such as something in my environment, diet, or lifestyle that significantly altered my symptom pattern.  The only thing so far that has controlled my vertigo with some degree of consistency is intratympanic gentamicin injections.  It is believed to control vertigo by destroying a percentage of the vestibular hair cells in the inner ear.  Many would call this treatment a drastic measure.  I call it a godsend.  It is not a cure and, as a result, I do have balance problems that will probably be lifelong (and would likely have occurred as a result of the natural course of the disease itself, anyway), but I am here and living life to the fullest.  Not the life I used to have, but the trade-offs have been valuable in their own, strange ways.

No comments:

Post a Comment