Disclosing a disability at work – part 3

July 7, 2011

Disclosure at work can be a difficult decision even in the best of circumstances.  Will it hurt my chances of advancement?  Will it give me protection for the accommodations I need?  Will it help others to know about my pain and fatigue?  Though I wish that honesty really was the best policy, when it comes to disclosure privacy may be the best option. 

Many questions are helpful to ask when making the initial decision.  Will I be able to complete the essential functions of the job without some accommodations?  What am I looking for and is disclosure the process to get me there?  I consider the risk associated with sharing particular facts and feelings regarding my “disability”.  How would I handle insensitive comments, silence and/or ignorance in the workplace?  Am I able to receive the support that they offer me?  When would be the best time to share and what specifically do I need them to know in order to succeed at my job?  It can also be helpful to know a little about who you are disclosing to, as reactions are usually about their own experiences and circumstances, and less about your particular situation. The answers to these questions aren’t stagnant, they will vary depending upon my health, the duties assigned, my co-workers and other life circumstances. 

Trust and effective communication are essential in the disclosure process with supervisors.  If I am unable to articulate my pain and my needs, it is impossible for them to grasp its impact.  Unfortunately, this isn’t always possible.  When I first returned to work, I wasn’t really clear about my needs in a work environment, because it wasn’t an experience I had encountered yet in my illness.  This lack of clarity, made my situation more complicated and created increased frustration.  I am much more persistent when I trust someone and more willing to ask for feedback and verify the meaning of key statements.   Without trust, it is difficult for me to feel safe especially when dealing with people in authority.  Generally specific request are granted, where emotional support is less defined.  However, emotional and practical support from a supervisor can make all the difference in the disclosure process. 

The ADA provides protection for disclosures but can create fear with supervisors regarding potential law suits.  I have found understanding the ADA is helpful in knowing my rights, as well as learning the language of the law.  However, an argument with an employer about rights rarely results in a positive work environment.  If disclosure is necessary (or apparent) it can be helpful to be clear about the specific request and why this is necessary for you to perform the essential functions of the job.  The JAN Network is a helpful resource to learn more about the ADA and accommodations for specific disabilities.  Being respectful, kind, clear and persistent will be aide in reducing the fears of the employer.  Most requests are best done in person with a follow up e-mail, but this may not be necessary for simple request and/or if the relationship with the supervisor is strong.  If an employer refuses or makes excuses it is important to keep accurate documentations in case further action is needed and/or desired. 

The issues with disclosure are numerous and can’t be completely communicated in a simple blog.  The most important thing about disclosure is regardless of the reaction of others at work, you have value in the workplace.  Find supportive people within the work place and/or outside of the workplace to process with whether you choose to disclose or to maintain your privacy.  Don’t give up.  Look for the gold in your relationships, your periods of growth, moments of service, your strengths, and living out your values. 

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Dislosure Part 2 – Friends and Family

July 6, 2011

Disclosing that I have chronic pain brings feelings of vulnerability and fear.  Will I be rejected or stigmatized?  Disclosure is complicated in many arenas.  Though it brings exposure, honesty and change, the individual effects can be both positive and negative.  Disclosure might be a comment that reveals that I have chronic pain, or a deep discussion where I share about my struggles and blessings of living with chronic pain.    

When disclosing with friends and family, I often don’t receive the desired result.  Some will express sympathy, yet it can be hard for all of us to enter a reality that is so remote from our own.  I do this when people share something I can’t completely grasp.  It isn’t always personal.  I may not connect the significance of what was shared nor the magnitude of the pain.  Other times, I may be feeling more self focused and self protective and fear entering their world for the unwelcomed feelings that appear.  I have to be careful of my own expectations of wanting people to understand something, especially when I can be guarded in my conversation.  The best validation for me usually begins with self affirmation, and then taking in the care of others even when it isn’t expressed in the way I would like. 

Disclosure with my loved ones wasn’t at all what I anticipated.  As a young child, I had day dreams about having an illness, injury and/or death that would bring greater love and attention into my life.  More often than not, my pain brought the opposite effect.  Close ones would ask questions, give advice, make judgments, and/or distance themselves from me.  Some of this was typical of the busyness of our society.  Other times, deep sharing, resulted in outward compassion through incredible support and service.  I had several friends make great sacrifices to help me during the more difficult times.  The most common response I received was “but you look good”, generally meant as a compliment, yet had little to do with my chronic pain. 

“Looking Good” had its own set of issues relating to disclosure.  Because I look healthy, it doesn’t always make sense the choices I made to reduce my pain.  I can laugh at the image of me in church sitting slouched in my chair (while others were standing) with sunglasses on to protect my eyes from the lights that were hurting my eyes.  I looked like a lazy, rebellious lady, instead of a person willing to do what was needed for the spirituality I desperately needed at this time.  I have had many other situations where I have needed to sit, move around or even lay down to reduce my pain and/or preserve my energy.  These situations helped me to grow past my worry about being watched and misperceived.  I can still feel self conscious, but do what I need to take care of myself. I learn to take risks to keep myself engaged and active which helped reduce my own pull towards depression and anxiety. 

Disclosure for me is more about the particular connection point, not necessarily related to the closeness of the relationship.  I have friends and family where we connect around our kids, spirituality, shared experiences, passions, beliefs, etc.  Discussion of my chronic pain doesn’t seem to fit into the picture.  It can be because this is outside of the scope of the relationship, and/or I want safe places to not focus on it.  It is the unique friendship that is able to go beyond the context and branch into new territory.  Sometimes this works, other times we go back to the familiar.  For some learning about my chronic pain in greater detail makes a shift in their understanding of my experience, for others they may consider it as a minor annoyance for me (like a sore ankle).  The greatest disclosures bring deeper sharing from the person I am talking with, where they share about their own struggles and our bond becomes greater.  For those closest to me in the universal sense, comprehension comes together like a puzzle, each sharing they seek to grasp, will gain a clear picture even if many pieces are missing.  This of course applies to all of us.  I too, must seek to learn about others, to hear their disclosures – of pain, of fears, of dreams…so I can see the true picture of who they are not what I want them to be. 


Disclosure Part 1 – When to speak

July 5, 2011

Today is one of those days I don’t want the stigma of having chronic pain.  I can’t go a week without reading in the paper or on the internet some of the stereotypes about people with chronic pain.  Some of these stereotypes includes:  it is all in their head, we have adequate treatment for chronic pain, they caused their pain, pain medication doesn’t help, etc. 
 

 It can be easier at times to create labels for people and situations we don’t understand.  If we can put a label on something that is not desirable, then we can remove ourselves from the unpleasant box.   Sometimes labels are necessary and helpful, giving us a pathway to treatment and understanding.  Other times, it creates an illusion of control, where we attempt to compartmentalize and ignore those who don’t fit perfectly into a box. 
 

Having the stigma of a mental problem can compound the sense of shame around chronic pain.  Mental illness is complex, and may or may not be related to chronic pain.  It can be hard to know cause and effect.  Did the mental issues come first or the chronic pain?  It is important to realize that as far as labels go, it doesn’t really matter. Both mental illness and chronic pain are medical issues where recovery is the desired result. However, not everyone who has chronic pain struggles with mental issues, just as not everyone with mental issues has chronic pain.  For those who have the burden of both, it can greatly intensify the shame. 
 

When disclosing about chronic pain, it is helpful for me to understand my own biases and beliefs about my chronic pain.  This gives me a greater ability to counteract negative comments from myself or others.  If I believe I am not competent, or overwhelm others with my illness, then it is easy to internalize the ignorant comment, or lack of response I receive when I disclose information about my pain.  I also will be able to receive compassion and care more easily, when I look for supportive comments.  Someone’s silence may actually be then processing the information, or be related to something else entirely.  Affirming my strengths is helpful for me to see myself in a holistic light.  I have strengths because of who I am, but also because of how my pain has transformed me.  As I choose to disclose, I will find that through this process, I will connect with some incredible people, where our unique experiences will unite us because of my disclosure about my pain.  


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