A Cry For Validation? or Whining?

"Get over it", "It can't be that bad", "move on", "its all in your head", "you're nuts", "I would hope you've gotten past this by now", "just don't think about it", "you're like a broken record"...

I've heard it all. Most chronically, invisibly disabled people have heard it. As if we could just make it all go away with willpower. Unfortunately for some of us, being Type A Personalities and using force of will helped put us in the positions we are now.

People like me spend a lion's share of their day dealing with their symptoms and managing pain. Aside from the enormous amount of time I owe & dedicate to my children, my disability demands to be next on my list and won't take "NO" for any answer.

I used to have a wonderful social life - but disability isolated me. Most of my friends now are people I have met online with whom I have a common bond. Those who make the effort to see me and get me out of my house the majority of the time? Are my doctors and their staff. I try to spend face time with as many of my friends I can - time, illness & distance permitting. I know its very important for my mental health. The old friends, the people who knew me before, are few and far between. Some of them outright admitted they couldn't deal with the fact that I wasn't getting better. Like one of my late parents said to me "you're useless now."

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing
They say I must be one of the wonders
of God's own creation
and as far as they can see they can offer
no explanation


"WONDER" - Natalie Merchant

Dealing with the comments and the subtle or not-so-subtle cruelty is hard. You can only ignore it for so long. You aren't blind to it but you feel shame if you call someone on what's hurting or bothering you. The whole ball of isolation and psychic pain starts to cut away what little ego and self-esteem you have left. Chronically ill people sink into depression and don't get help because they feel "no one wants me around anyway." And of course all this contributes to your illness getting worse.

Invalidation may be the single most damaging form of psychological abuse. All invalidation is a form of psychological attack. When we are attacked, our survival instinct tells us to defend ourselves either through withdrawal or counter-attack. Repteated withdrawal, though, tends to decrease our self-confidence and lead to a sense of powerlessness and depression. On the other hand, going on the offensive often escalates the conflict or puts us in the position of trying to change another person.


How the other person responds to your emotional honesty will depend upon, and be indicative of:


(a) how much they respect you
(b) how much they care about you and your feelings
(c) how insecure and defensive they are
(d) how much they are trying to change or control you

- Steve Hein

I plan to keep talking about it so if you don't like it, skip my posts about disability. Or pass it on to those who care and want to understand the plight of the disabled underclass.

We need validation and understanding. We need you not to turn your heads because you don't feel like dealing with it.

And we need it yesterday.
 

People see me
I'm a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of God's own creation
and as far as you can see you can offer me
no explanation
"WONDER" - Natalie Merchant

The Stigma of Neuropathic Pain
In my work as a physician, one thing that has always bothered me is the patient with 'neuropathic pain'. Here is the typical scenario:

A patient with a history of chronic pain (usually back pain) and pain medication use comes to the hospital for surgery. Post operatively, the patient’s pain is poorly controlled, despite administration of high doses of morphine derivatives. On examination the patient is extremely tender to touch, in areas remote to the operative incision. Both the medical team and surgical team are uncomfortable administering higher doses of medication. They prefer to consult the pain management team, referring to the pain as 'neuropathic'.

In the medical profession, we are bothered by patients with neuropathic pain for several reasons.

Most obviously, we get frustrated that we can’t make them feel better. Despite high doses of medications and bedside counseling, we can’t seem to ease their pain.

The main reason we are frustrated is that our mission is to make people get better. We tend to overlook the simple fact that pain is a subjective phenomenon. What is painful to one person may not be as painful to another. When we administer high doses of pain medication to no relief, we get suspicious of our patients as drug seekers. We don’t want to promote drug seeking behavior, despite not really knowing what it is like to have uncontrolled pain.

Perhaps the worst thing about medicine is that once this term makes it in a patient’s chart, it follows him or her forever.

The stigma associated with having chronic pain issues can considerably alter a patient’s pathway of care. Doctors tend to shuffle problematic patients to those providers that are capable and willing to participate in their care.

Most of the health care providers I have dealt with who are comfortable with neuropathic pain patients are pain management specialists, neurologists, rheumatologists, and physiatrists.

Unfortunately, the rest of us seem to perpetuate this stigma throughout the health care system.
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* The “open-access” http://brainblogger.com/ site is sponsored by the Global Neuroscience Initiative Foundation (GNIF), which describes itself as “a non-profit charity organization for the advancement of neurological and mental health patient welfare, education, and research. We aim to further brain related studies, end stigmatization and discrimination, improve the well-being of afflicted individuals, promote the free and open-access distribution of brain related information, and institute universal and multidisciplinary distance educational programs.”

THOUGH THIS NEXT ARTICLE (click here) IS WRITTEN WITH FIBROMYALGIA PATIENTS IN MIND, IT IS A GOOD READ FOR ANYONE DEALING WITH AN INVISIBLE DISABILITY AND PAIN.