Saying that you are okay is so much easier than explaining all the reasons why you aren't.
When someone breaks a bone, they wear a cast. People see the cast and know they are injured. What about people who suffer from an invisible illness or chronic pain — unseen to the human eye, but internally felt.
Setting the Scene
Back pain is not always seen, but it's always felt. Onlookers only see your limitations and may assume you are lazy. You know you are not.
For the 100 million Americans who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are "invisible," explaining what's wrong can sometimes translate into an assumed “side effect” for your condition.
Not only do you have to put up with challenging, often painful, and sometimes debilitating symptoms every day, on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who simply don't understand your pain.
Unfortunately, doubt is not the only uphill battle that people with "invisible illnesses" like fibromyalgia, chronic fatigue syndrome, and arthritis have to climb.
Peter Bongiorno, ND, a naturopathic physician with InnerSource Health in New York City, reported that patients with an invisible disease often have to fight simply to get access to handicap services or even help from their doctor.
"Oftentimes doctors will recommend the patient visit a psychiatrist, their partners tell the patient to basically ‘learn to deal,' and bosses and co-workers view the patient as a chronic complainer," he revealed.
This lack of belief in the illness can affect people financially (and emotionally as well).
"Some unscrupulous insurance companies use this medical confusion to avoid paying people the health and disability insurance benefits they paid for," explained Dr. Jacob Teitelbaum, director of the Fibromyalgia and Fatigue Centers and author of Pain-Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now.
"This can leave people impoverished as well as crippled," Bongiorno added.
Pat F. Bass III, MD, MPH, is a professor of medicine and pediatrics at Louisiana State University Health Services Center-Shreveport. In addition to his clinical practice, Bass is actively involved in both medical education and clinical research. Bass gave BackerNation some tips on how to help others understand your illness a little better.
How to Help Others Understand Your Pain
There are a few steps you can take to turn doubters into believers when facing the challenges of invisible illnesses like fibromyalgia, chronic fatigue syndrome, arthritis, or other types of chronic pain.
Start with your doctor. If you have to convince your physician you have a real disease, you may be seeing the wrong physician. Holistic physicians or pain specialists belonging to the American Academy of Pain Management are more likely to be familiar with invisible diseases. It's always worth it to obtain a second opinion. Your current doctor may not be the right one for you, and that's OK.
Try talking to your coworkers and loved ones. Patients have success by having the people in your life read up on the medical literature about your condition. This will make them not only knowledgeable but maybe a little more empathetic to your situation and pain.
Invite a loved one to attend a doctor's appointment with you. Ironically, if your friends or family don't hear the information directly from a medical professional, they may not fully believe or understand. Bringing them along to your appointment will allow them to hear it straight from the horse's mouth. It may even help them to accept and begin to really understand what's wrong with you and how you feel on a daily basis.
Join a Support Group. Even if your loved ones begin to understand your chronic back pain a little more, they may never completely relate to what you are going through. That's why finding a local or virtual support group where people with your condition gather. It can be helpful to speak with like minded people who feel your pain, every day.
Ask your doctor about support groups in your area or check online for more information.