INTRODUCTION TO INVISIBLE ILLNESSES

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Those who suffer from chronic pain and invisible illnesses have to withstand far more than just the pain that accompanies their condition. This article looks at that fact and gives some very basic ways to take forward steps.

Submitted: September 13, 2014

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Submitted: September 13, 2014

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by Rev. Jeff Hagan, ThD, CEdD

Introduction:

If you suffer from a chronic, invisible condition like Fibromyalgia, Chronic Fatigue Syndrome, or a host of other invisible illnesses, you know it can be incredibly frustrating and overwhelming in so many ways, including the fact that your persistent pain isn't visible from the outside.

People who break their leg, throw out their shoulder, or experience some other kind of injury might have it tough for a while, but other people can see their injury and therefore they have some kind of understanding of their situation and limitations.

But for millions of us living with Fibromyalgia, CFS, and other forms of chronic pain that are “invisible illnesses,” explaining what's wrong is another burdensome effect of our condition. Not only do we have to deal with challenging, painful, fatiguing, and often times even debilitating conditions every single day, we also have to face doubt and skepticism from people like friends, family, co-workers (if we are fortunate enough to be able to work), strangers, and even doctors and nurses who don't understand what's wrong with us.

Challenges:

I know all of the above was and is the case for me, a Washingtonian who has lived with fibromyalgia and chronic pain for over twenty years. My symptoms were so overwhelming at first that I couldn't even manage them. Not understanding the pain I was going through kept me from work and socializing for quite some time. Luckily, I had a close friend who supported me emotionally, financially, and medically anyway that he possibly could. To be honest, I don't know if I'd be here today if he hadn't been there to help me over that initial hurdle.

Then, much later in life, I started noticing most of my friends had stopped calling or asking me to hang out. I kid you not, these kinds of illnesses completely change who we are. Some people just don't understand, others can't handle seeing you in pain, others don't know what to say, others write you off as lazy, selfish, or a host of other false labels.

My social isolation and other challenges are no different than so many of you out there who also deal with one or more of these conditions. Many of these health issues can be hard to prove, and workers' compensation and personal injury cases, as well as applying for social security disability, are long, drawn out, discouraging processes where often times the result ends up being that nobody wins. In addition, patients usually receive a lack of sympathy from both family members and medical professionals. Sadly, doubt or fear that anything will come to fruition is not the only struggle people with “invisible illnesses” must face. According to Dr. Peter Bongiorno of New York's InnerSource Health, people with invisible illnesses often have to fight to simply get access to handicap services or help from their own doctors. “Often times 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,” Bongiorno says.

This denial of the illness can affect people financially as much as anything else. “Some unscrupulous insurance companies use this medical confusion to avoid paying people the health and disability insurance benefits they paid for,” says 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.” He continues, “This can leave people impoverished as well as crippled.”

Handling Challenges:

There are some things we can do in an attempt to turn skeptics and doubters into believers when we face the challenges of invisible illnesses like Fibromyalgia, CFS, or other chronic pain conditions.

Your doctor is a good place to start. The solution, as far as doctors go, is rather simple according to Dr. Teitelbaum, “If you have to convince your physician you have a real disease, you are seeing the wrong physician...[Rheumatologists] or pain specialists belonging to the American Academy of Pain Management are more likely to be familiar with these conditions.” I would add there are others who specialize in these types of conditions as well.

The next thing, try talking about it with your co-workers (if you are able to work), friends, and loved ones. Don't force it, but as opportunities present themselves discuss it with those who are closest to you. Be prepared, have some solid information with you (or memorized), maybe even hand out articles or pamphlets, when it' sappropriate, that present facts and information regarding your condition or invisible illnesses in general.

Another thing that may help turn skeptics and naysayers into believers is to have a loved one come with you to a doctor's appointment. Sometimes when people hear a doctor stating that you suffer from Fibromyalgia and/or chronic pain, that will help them better accept the fact and they may attempt to understand what's actually wrong with you.

Conclusion:

Sadly, many of us know that we can take all of these steps and people in our lives will still doubt, judge, and be skeptical. Or, if they do attempt to understand, as time passes their empathy and understanding pass away as well because our illness is not “out there” for them to see.

Even if your loved ones do begin to understand your invisible illness a little better, they can never totally relate to what it is you are forced to go through. This means you need to find a support group with the same condition that you have. Finding a support group can be very beneficial. If nothing else, it helps you realize you are not alone. If you don't know where to start, try asking your doctor about support groups in your area. If that doesn't get you anywhere, try searching online for information.

As always friends, one day at a time.


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