Monday, August 3, 2015

When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.org) on April 30, 2015


“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients.  They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am.  He thinks it’s all psychological.”

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis.  They think it is wrong.  I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside.
 
 
They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain. 
They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me.  Chronic pain is not something that anyone should feel like they have to convince another person of.  It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick.  Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability.  Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.

And being told that their doctor must be wrong or that they should hide their pain only makes things worse.

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong.  However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct.  After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals.  It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.

It means trying to make sense of this new person they have been forced to become and the new reality they are now living.  All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

1 comment:

  1. My grown children think I have some kind of "disease" and that I keep the real diagnosis from them. They cannot imagine having pain like I do and not have a proper diagnosis to go along with it. Nerve pain and fibromyalgia do not qualify in their book of legitimate medical maladies. I no longer like to bring up anything related to my health to them. They would like for me to visit them more often to see my grandchildren and cannot understand why I find it difficult to commit ahead of time which is sometimes the case (they live 6 hours away by car). The pain I have tends to run in cycles; it's so frustrating to hear the anger in their voices. It's like they think I'm a hypochondriac or else I'm keeping something from them. Our relationships are strained now and I'm grieving over the loss of closeness I once had with them. My oldest daughter is 50 years old and my other daughter is in her mid 40's. They do say I look fine and can't imagine how I can look "OK" and be in such pain.

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