With Great Mercy

Finding hope when you have trigeminal neuralgia and other types of pain

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Experiencing and Recognizing Loss - Disability

With Great Mercy(Don't miss the Q&A below.)

Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone, but it’s beyond our grasp.

Disability is a topic I can really get fired up about. Some people who have facial pain cannot function without disability provisions. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal and enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves, and we also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, and their self-worth. The list of losses goes on and on. Let's get even more personal about these deficits: people who have trigeminal neuralgia and other types of facial pain have lost their ability to do things like kissing, speaking, chewing, swallowing, concentrating, remembering important things, and brushing their teeth.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's difficult to stay positive about life but we must focus on the good things that remain with us. But to get the money that awaits people whose claims are approved, we have to think about our worst case scenarios and expose our vulnerabilities. Such exposure and vulnerability is downright frightening.

We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. When we explain the pain and dysfunction, the feelings we try so hard to suppress begin to surface.

We feel so alone, like failures, but we aren't either one of those things. We are coping with something many people are afraid to understand. After all, if it happened to you it could it happen to them. Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

It’s important to convey the reality and depth of your pain and loss during the disability application process. It's not fun to share the story of your painful journey with others who may not understand. Opening up to a complete stranger may feel crummy, but you're surviving the pain, and you'll survive this process.

With Great Mercy

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Q: Is trigeminal neuralgia or neuropathic facial pain a disability?

A: The Americans with Disabilities Act (ADA) says this "Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine." Under the ADA, an individual with a disability is a person who:

  1. has a physical or mental impairment that substantially limits one or more major life activities;
  2. has a record of such an impairment; or
  3. is regarded as having such an impairment.

Q: How can the ADA benefit me?

A: The ADA’s mission is to protect people with disabilities from experiencing discrimination. Federal government agencies provide assistance for people with disabilities, such as information about accommodations at the workplace, Social Security benefits, or help with environmental barriers. The federal government provides each state in the US with funds for state vocational rehabilitation programs.

Q: How can environmental barriers be relevant to a person with facial pain?

A: Environmental barriers can trigger pain and make it difficult for people to perform assigned tasks or activities of daily living. Parking can be an issue because the wind or cold triggers the pain. It makes walking through the environment difficult, even though the environment may look perfectly normal to people who do not have facial pain. You may want to discuss an accessible parking permit with your physician. Artificial light, noise, and air conditioning vents are just a few situations that may be considered environmental issues.

Q: I’m having trouble on the job. What can I do?

A: You can ask for an accommodation. If your employer has 15 or more employees, the company is obligated to provide a reasonable accommodation, one that does not cause an undo hardship on the employer. The Job Accommodation Network (or JAN) is part of our Department of Labor, and they can suggest options such as flexible work hours or an office that is separated from environmental issues. You’ll likely need documentation of your disability and need for accommodation from your treating physician. You may find that you need some time off. Become familiar with the Family Medical Leave Act (FMLA). Some of the laws vary by state, so you might want to put the name of your state when you use keywords to search for information.

See our links below for more information:

ADA Definition of Disability

www.adata.org/whatsada-definition.aspx

US Labor Office of Disability Employment Policy

www.adata.org/whatsada-definition.aspx

US Department of Labor Job Accommodation Network

www.jan.wvu.edu

Disability information website maintained by a legal firm

www.disabilitysecrets.com

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