Disabled Chronic Pain Sufferers

Disabled Chronic Pain Sufferers:
Questions and Comments to Avoid and My Personal Recommendations

Important Questions to Avoid

  • “When will the pain go away?” and/or “When will you go back to work?”
    These are probably the most frustrating questions that I am asked.  Please understand that pain is not understood well even by most physicians.  Each body is unique and each individual heals at a different pace.  There are certain conditions, including Ehlers-Danlos Syndrome, which I am also affected by that make rehabilitation much more complicated.  My form of the condition results in hypermobility, joint laxity, joint instability, and joint damage.  Until May 2011, I always assumed that everyone was as flexible as I was.  It was not until I started rehabilitation with my current physical therapist, that it was discovered that I have Ehlers-Danlos Hypermobility Syndrome.
  • Do you have an attorney?
    Many disabled chronic pain sufferers have been involved in accidents, which were outside of their control.  Therefore, yes many have attorneys and litigation is definitely a possibility.  However, this is a highly personal question and seemingly invasive.  This is the topic I care least to talk about and I will refuse to do so.  Asking such a question does not show concern for one’s well-being, rather it shows your interest in their potential compensation.  So please avoid allowing your curiosity to get the best of you and avoid this question at all cost.
  • Are you receiving a paycheck?
    Unless, you are offering monetary assistance, then avoid this question.  Again, this is personal in nature and off limits.

Important Comments to Avoid

  • “Things could be worse.”
    Well of course it could be!  Every situation could be worse.  However, each situation is also relative to a person’s coping mechanisms, social support, and other life experiences.  I recall saying after my father died, “If I can get through this and not take time off from medical school, and visit my mom every day for over a year, and end a marriage engagement, and continue to go to the gym for up to two hours a day on most days, then I can get through anything.”  I will never say “I can get through anything” ever again.  I say this because my experiences with my motor vehicle accident have proved more difficult than even the death of my father.  When my father died, I at least retained my sense of self.  My accident affected each and every single aspect of my life.  Now, I am getting through this experience as well.  However, I realize that I may not have been able to if I had not already managed to go through other life experiences including the death of my father.
  • “You look fine.”
    Looks are deceiving.  Many conditions that result in disability and pain do not display physical features of an “ill appearance”.  I have had pain daily since December 15, 2010 and “I look fine.”

 Personal Recommendations by Dr. Nicole M. Eastman

  • Listen.  This is difficult.  Practice this skill and do so often.  I personally strive to improve in this area, which admittedly has been an area of weakness.  I have always been quite vocal; however, the skill of listening allows one with much more in regards to insight.
  • Do not compare your pain to their pain.  Also, do not compare someone else’s pain that you know to their pain.  This does not help the affected person with their personal pain; and, most often it is perceived as a lack of care and understanding.  Remember to listen.
  • Pray for the affected person’s healing and “acceptance”.  I have seen the power of prayer time and time again.  If you attend a church or are considering attending a church, then submit a prayer request.  During one church service, I met a woman who I had never encountered in person previously.  We exchanged some personal information and she said, “I know you.”  She then stated, “I know you.  I prayed for you.”  I had put a prayer request into our church prior to attending and prior to my spine surgery.  This woman remembered me when I met her several months afterwards.  Our conversation left me with an amazing feeling of gratitude and genuine care.
  • Encourage psychological therapy and marriage counseling if applicable.  Psychological intervention does not equate to personal weakness.  There is great strength in recognizing that one needs objective advice and support.
  • Do research and find a professional who has counseled other individuals with similar issues.  Not all therapists were created equal.  For example, my husband and I see a marriage counselor who specializes in high-conflict marriage resolution and post-traumatic stress disorder.  Marriage counseling, despite what others have said, can and does work if both parties are willing to put the effort forward.
  • Offer to provide assistance in areas of need.  This may include household services, grocery shopping, childcare assistance, transportation, listening (yes, I listed this again and I did so intentionally), etc.
  • Know your limitations.  This applies whether you are a health professional, a family member, or a friend.  Realize your role and do not let your ego and personal desires get in the way of truly supporting and helping the affected individual.  Physicians and other healthcare professionals need to practice patient-centered medicine.  If you do not realize limitations, then you will be yet another source of stress.
  • Understand that pain wears on an individual.  No matter how optimistic one is, pain may get the best of them.  Please keep this in mind and do not take it personally if the affected individual avoids your phone call, declines attending a social gathering, etc.  Pain medicine does not take chronic pain away; rather it helps to minimize the symptoms and allows for some improvement in quality of life.  Some days are better than others and underneath that smile could be pain.  Remember, looks can be deceiving.

All of the above recommendations were compiled based on the personal experiences that I have encountered over the last ten months.  I hope that this direct and honest insight will provide assistance for those who are personally affected or who have relationships with individuals who are affected by disability and chronic pain.  Thank you for your time today and please feel free to share this information with others.