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Why don’t people believe I have chronic pain?

November 05, 2015 | Navid Alem, MD
Chronic pain

If you live with chronic pain, you may feel like you’re constantly being judged.

You look fit, so friends and family can’t understand why you’re sleeping so much or missing work. You don’t look sick, so they can’t understand why you’re going to another doctor or taking another medication.

Coping with pain stigma

I often meet patients in pain who feel like no one believes them — including their doctors.

Dealing with the stigma of pain can put you on the defensive. You may feel like you’re guilty until proven innocent.

This stress, added to the physical pain you are experiencing, can lead to anxiety, anger and depression.

However, you can take steps in your pain management strategy to better cope with the pressure.

How we as a society understand pain

More than 25 million Americans report having pain every day for the previous three months, according to a recent survey by researchers at the National Institutes of Health published in the August 2015 Journal of Pain. That’s about 11 percent of the population.

We can’t see pain. And because we can’t see it or physically measure it, it can be difficult to understand how it affects other people.

Pain serves an important purpose as a survival mechanism: You feel pain and your body tells you to move away from whatever caused that pain. You rest, let it heal and then you’re supposed to move on. We understand short-lived painful conditions.

Chronic pain, however, is much more complex. It may have started with an illness or injury that you have recovered from, but the pain remained; it could be caused by a long-term illness such as cancer; or its root may not be identifiable.

If you lose a leg, you will get a lot of sympathy and empathy. People can see that injury and understand the pain involved. But if you have complex regional pain syndrome, which can feel like you’ve lost a limb, people may not understand what you are going through because they can’t see a physical change.

The degrees to which different people experience pain also can be difficult to comprehend. For example, everyone has had back pain at some point. However, someone who has had back pain but was able to remain active may not understand how someone else with back pain can’t even get out of bed.

How to seek support for pain management

When you’ve been in pain and faced skepticism for as long as many of my patients have, it’s inevitable the stress will take a toll on you, not just physically, but mentally as well. It can affect your personality and the way you interact with others. 

If this is happening to you, please consider these steps:

I suggest looking for a doctor who treats the whole person, asks you questions about more than your direct pain issue and integrates multiple therapies.

If you have chronic pain, your pain management team should be composed of skilled professionals such as:

Don't just treat the symptom 

It’s important to think about this as not just treating a symptom.

We insist on a comprehensive approach that encompasses all the components we have at our disposal, such as medication, spinal cord stimulators and surgery. This also includes complementary and alternative medication therapies such as cognitive behavioral therapy, acupuncture and massage.

While we do treat pain, we focus heavily on the wellness component. We want you to move on from your “sick role,” which will allow you to feel empowered to lead a more normal life.

I work closely with mental health providers in the care of our chronic pain patients. When I suggest that you see a counselor or psychiatrist, it isn’t because I don’t believe you are in pain or that I think it is “all in your head.” I say it because no one can suffer chronic pain and not have it affect his or her mental health.

Mental health professionals can give you an outlet to express your feelings and learn to cope with any negative perceptions, anxiety and depression you may be experiencing. They also can help you learn techniques such as meditation to address not only your pain but the stress that comes with it.

Remember, it’s always OK to go for a second opinion. Because most importantly, it’s about finding that right fit. If you are able to develop a therapeutic relationship with your doctors, you will see more positive results.

How families are affected by chronic pain

It’s hard to see someone you love in pain. Because chronic pain affects more than just the patient, it’s important to make sure everyone involved gets the help they need.

Patients’ loved ones often tell me their family can’t have a normal day anymore. They can’t go out for dinner or go on trips without leaving the patient behind. They sometimes are unable to express themselves for fear of reaction from the patient.

In these cases, it’s important for the whole family to participate in counseling in order to nurture their relationships and their individual needs.

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