When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.com) 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.”

Accepting Chronic Pain: Is it Necessary?

As published on Pain News Network (www.painnewsnetwork.com) on March 25, 2015
 

A patient of mine told me the other day, “I don’t think I will ever be able to accept my chronic pain. It has completely changed my life.”  

I think this is something that most people with chronic pain contend with at some point in time; wanting to hold onto hope that their diagnosis isn’t chronic or not wanting to come to the realization that they will have to live with the pain forever. 

When most people hear the word “acceptance” they equate it with the notion that they should feel that it’s okay or it’s alright to have a chronic condition.  Many people don’t ever feel okay about having to live with pain or an illness for the rest of their lives. It is not something that is easy to get used to and it’s not fair.

  • Accepting chronic pain does not mean giving into it and it doesn’t mean that you stop looking for treatment.
  • Accepting chronic pain does not mean accepting a lifetime of suffering.
  • Accepting chronic pain does not mean you are never allowed to feel angry or sad.
  • Accepting chronic pain does not mean that you have to give up hope for the future.

When I use the word “acceptance,” I mean accepting the reality of your situation and recognizing that this new reality could be permanent. Those of us with chronic conditions may never like this reality and it may never be okay, but eventually it is necessary to accept it and learn to live life with it. It is the new norm with which we must learn to live. 

Acceptance also involves making adaptations and alterations to our lives.  We must find new things that bring us joy and we must have hope for the future.

  • Accepting chronic pain means learning to live again.
  • Accepting chronic pain means advocating for ourselves and our health so that we can be as healthy as possible.
  • Accepting chronic pain means learning our limits and learning to cope with feelings of guilt when we have to say “no.”
  • Accepting chronic pain means being able to look at your diagnosis as something you have, not who you are.  Your condition does not define you.
  • Accepting chronic pain means re-evaluating your role as a husband/wife, mother/father, etc. as well as your life’s goals -- and figuring out how you can maintain these roles and attain your goals with your chronic condition.

For many of us, learning to accept our chronic condition isn’t easy.  It is a learning process with a lot of ups and downs.  It is something we may resist and something we may think impossible.  It is difficult to accept something that has completely changed our lives and possibly the direction we thought our life was going to take.

Why is it necessary to accept your chronic condition?

Once you are diagnosed with a chronic condition, it will be always be with you.  The sooner you are able to begin the process of acceptance, the sooner you will be able to learn exactly how to live with it.  It is also how you will learn to cope.

Accepting chronic pain means learning to live life in a different way than before your diagnosis.  It means learning to pace your activities, educating yourself, taking your medications, advocating for yourself, and surrounding yourself with support.  It also means accepting that some aspects of your condition are out of your control.  

Chronic pain can be unpredictable.  There may be days when you feel in control of your pain and you are able to accomplish everything you would like to.  There may also be days when your pain is unbearable, you feel angry about your situation, and all you can do is rest.  Accepting your chronic pain means adjusting and adapting to the ways in which your life is different now that you may be living with this kind of unpredictability.

Your life may never go back to what it was prior to your chronic pain.  But that doesn’t mean you can’t live a happy, successful, hopeful life with pain.  Learning to accept your chronic pain can help you get there.

The Sleep-Pain Connection

Sleep and pain are quite connected.  Disturbances in sleep patterns are either a symptom or cause of a problem.  With chronic pain, it is often both a symptom and a cause of increasing pain.

When I first began working with chronic pain patients I read about an interesting study where “normal volunteers” were awakened throughout the night over successive nights.  They were awakened such that their REM sleep was disturbed each time.  After a few nights, the volunteers developed symptoms of a chronic pain disorder called fibrositis.  Fibrositis is characterized by a variety of symptoms.  The primary symptoms are painful patterns of muscle points in the neck, shoulders, arms, back and legs and a feeling of fatigue.  Headache and related problems often accompany these fibrositis symptoms.

The neurochemical serotonin is involved in many things, including sleep, digestion, mood and pain.  We also have natural pain relievers called “endogenous opioids”.  Changes in serotonin levels participate in lowering the levels of these natural pain relievers which allows an increased reception of pain throughout the nervous system.  This pattern creates a change in sleep and mood.

After learning about this sleep-pain connection years ago, I made it a point to concentrate on sleep hygiene with all of my chronic pain and chronic illness patients.  If you are having difficulty sleeping, try some of these sleep hygiene techniques to see if they help you get a more continuous, restful night sleep.

During the Day:

  • Remain as active as possible during the day without overdoing it.
  • Avoid naps unless necessary for pacing.  If naps are necessary, keep them to 20 minutes maximum.  The more you sleep during the day the more difficult it will be to sleep at night.
  • Limit caffeine, especially in the afternoon.
  • Participate in regular exercise – whatever you can do: walking, swimming, etc.
  • Take a hot bath or shower to relax yourself.
  • Keep work out of the bedroom.  The bedroom should only be used for sleep and sex.
  • Get out of the house and do something, even if you don’t have anything planned.

Evenings and Bedtime:

  • Establish a bedtime routine: brushing your teeth, washing your face, changing into pajamas, etc.
  • Engage in a relaxing activity such as reading or watching TV for a set amount of time.
  • Avoid caffeine in the evening.
  • Stop drinking fluids at least an hour before bed to avoid waking in the middle of the night to use the bathroom.
  • Prepare for the next day.  Set out your clothes, write down things you need to get done, concerns you may have, etc.  That way, these thoughts won’t keep you up at night.
  • Try some light stretching before bed.
  • Go to sleep and wake-up at the same time each day.
  • While in bed, engage in relaxation techniques, such as progressive muscle relaxation (if it is not painful for you), deep breathing or pleasant imagery.
  • Keep your bedroom dark, quiet and comfortable. 
  • Do not focus on sleep.  Thinking about how you need to get to sleep or worrying about not being able to sleep will only prevent you from sleeping.  Instead, focus on relaxation and deep breathing.
  • Use thought stopping to keep yourself from thinking negative thoughts.
  • Use a heating pad or ice pack to help relax your muscles.

Interrupted Sleep:

  • Use relaxation techniques to help you get back to sleep.
  • Stretch or change positions.
  • Use whichever techniques helped you get to sleep in the first place.

Sweet dreams!

Psychological Stages of Chronic Illness/Chronic Pain

A little over a year ago, I wrote a post about the five stages of grief developed by Elizabeth Kubler-Ross and how they could be applied to patients with chronic conditions.  Since that time I have thought a lot about the feelings and reactions I had when I was diagnosed with ulcerative colitis and the feelings and reactions I have had since my diagnosis.  I have also paid close attention to what my patients have been through and are currently going through and I decided that while the stages of grief are accurate, there seemed to be some things missing for those of us with chronic conditions.  As a result, I have added/changed some stages.  Remember, these stages are not linear.  While some people begin in the denial stage, move through each stage and end with acceptance, many people jump back and forth throughout the stages.  Please let me know what you think!

Denial

In this stage, we are in a state of shock and refusal. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic illness/pain because at this stage if they are in denial about their illness or pain, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away” or “The doctor is wrong, I don’t have diabetes.”

Pleading, Bargaining, Desperation

This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness/pain go away or anything that could give us some semblance of the life we once had.  Guilt is often bargaining’s companion.  We may find fault in ourselves and what we think we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel it anymore.

Example: “Please just don’t let this ruin my life”. or “If you make the pain go away I promise I’ll be a better person.”

Anger

After we conclude that our pleading and bargaining is not going to result in a change in diagnosis anger sets in.  It is also an emotion that is often felt later on when the illness/pain progresses or holds us back from doing the things we would like.  Anger is a necessary stage of the healing process. Feelings of anger may seem endless, but it is important to feel it. The more you truly feel it, the more it will begin to subside and the more you will heal.  Your anger has no limits and it may extend not only to your friends, doctors, your family, yourself and your loved ones.

Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”

Anxiety and/or Depression

Feelings of emptiness and grief appear at a very deep level.  This depressive stage feels as though it will last forever.  It is important to understand that this depression is not a sign of mental illness.  It is the appropriate response to a loss or a life-altering situation.  We may withdraw from life and may wonder if there is any point in going on.  Depression after a loss is too often seen as unnatural or something that needs to be snapped out of.  Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had.

Having a chronic illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother”. or “I’m going to be in debt forever.  How am I ever going to pay off these medical bills?”

Loss of Self/Confusion

Having a chronic illness or chronic pain may mean giving up some key aspect of what made us who we were.  It may mean an inability to be physically active like we once were.  It may mean not being able to be as sociable as we would like or it may even mean giving up a career.  You may wake up one day and not recognize the person you are now.  You may question what your purpose is now, whereas before your diagnosis it was so clear.  This stage may occur at the same time as Anxiety and/or Depression or it may be separate.

Example: “I don’t even recognize myself anymore.” or “My career was my identity.  Who am I without that?”

Re-evaluation of life, roles and goals

Having a chronic condition often means giving up a lot.  We are forced to re-evaluate our goals and futures.  We are forced to re-evaluate who we are as a husband, wife, mother, father, sibling or friend.  While we once had a successful career that we loved, we may find ourselves beginning to question what we can do for work in the future and how we can contribute to our families.  While we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days and how we can accomplish these goals while still remaining in a positive mood at the end of the day.  Re-evaluating your life, roles and goals is a crucial first step in accepting your condition.

Example: “I may not be able to be a nurse anymore but maybe I could teach classes a couple times per week.” or “I can’t be as physically active with my husband anymore so what else can I do to show him I love him?

Acceptance

Acceptance is often confused with the idea of being “OK” with what has happened. This is not true.  Many people don’t ever feel OK or all right about having to live with pain or an illness for the rest of their lives. This stage is about accepting the reality of your situation and recognizing that this new reality is the permanent reality. We will never like this reality and it may never be OK, but eventually we accept it and we learn to live life with it. It is the new norm with which we must learn to live. We must make adaptations and alterations to our lives. We must find new things that bring us joy.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can”.

Common Misconceptions About the Chronically Ill

Misconception #1: You look fine therefore you must feel fine

This is probably one of the biggest misconceptions about the chronically ill. People with a chronic illness may look fine on the outside but that doesn’t necessarily mean they feel fine on the inside. Not everyone who has a chronic condition is in a wheelchair or walks around with a limp. In fact, most chronic illnesses are invisible.

Misconception #2: It must be so great not to have to work

Sure, it sounds great to a lot of people not to have to work…if they had the choice. Most of the time, people with chronic illness are not working because they can’t. Most people with chronic illness would gladly trade their illness for the 40 hour work week again.

Misconception #3: Getting more rest will make you feel better

For a lot of people with chronic illness, rest is helpful. But it may not make them feel drastically better. It’s not going to make their symptoms go away and it may not mean that they are then going to feel well enough to go to an event or social engagement.

Misconception #4: Chronically ill people are just lazy

Chronically ill people are not lazy. Most wish they could engage in the mundane chores and tasks that most people complain about. They would gladly do the dishes, take out the trash, and pick up the dog poop if they could. They would be happy to work eight hours, take the kids to practice, clean the house, help the kids with their homework and cook dinner all in one day if it meant they didn’t have a chronic condition that was keeping them from doing these things.

Misconception #5: If someone with a chronic illness is out living their life they must not really feel that bad

Just because someone with a chronic illness isn’t at home in bed all of the time doesn’t mean they’re not really sick or that they don’t really feel that bad. There are still things that need to be done despite having a chronic illness, like getting a few groceries or walking the dog down the street. People who have chronic illnesses do these things despite feeling horrible some of the time. It is a part of life with a chronic illness.