Social and Psychological Factors in Sleep Disorder Recovery
For people with Obstructive Sleep Apnea and their healthcare professionals, peer coaching article #5, updated 21 November 2011
“I realized that I had a handicap rather than a moral defect. Finally, I could stop criticizing myself for not meeting social and personal standards of behavior.” Sleep apnea patient Jerry Halberstadt, Sleep Apnea – The Phantom of the Night, p. 154
Just as we’re all different in our physical conditions, we’re all unique in our psychological nature and approach to life. Listed below are a few personal issues related to sleep disordered breathing (SDB) and CPAP treatment that can come up, not even including equipment issues. If you have a family member or friend who is not very supportive of your condition and CPAP therapy, perhaps discussing some of these items will increase their awareness and understanding.
“Have I accepted that I have a serious medical condition, or am I still in some stage of denial? What emotional impact has this diagnosis had on me? How am I dealing with it? Am I making the best decisions in this weary and sleep-impaired condition? How good is my judgment? If I haven’t denied having sleep apnea, have I adopted the harmful and false belief that I can’t get used to CPAP?
This is the first time I’ve had a serious medical condition. Is it really life-threatening? It brings up issues of vulnerability, infirmity, aging, and mortality that I haven’t experienced before. How do I feel about that? Or, now I have this condition on top of other serious conditions. How do they affect each other? How do I deal with them all?
Why don’t more people understand sleep apnea? Why did my doctors not diagnose my sleep apnea for so many years? Did they misdiagnose and mistreat my other health problems when they were really sleep apnea? Did undiagnosed sleep apnea cause my other health problems? How do I feel about that?
Is untreated sleep apnea an affliction, a chronic disability, a handicap? If it’s effectively treated, is it still a handicap or impairment? Will I ever feel as good as before? How does this affect my image and self-concept? What will others think of me at home, at work, in the world?
How difficult is the therapy? How do I face my fears? Can I succeed? Can I do this long term; do I want to? What kind of support do I need and can I get?
I don’t like being dependent or an addict. How do I deal with being tethered to a machine every night for the rest of my life? How do I deal with being dependent upon a machine for my health and well being?
How does this affect my spouse, family, friends, co-workers? How can they deal with these changes? How do they support me? What blocks are other people putting up? What blocks am I putting up? How well do I support myself? How do I get around these blocks?
How does using CPAP equipment at night affect the comfort of my bed partner and sexual relations or dating? My libido is still low. Will that improve? Or, my libido is much better now that I’m on CPAP. Either way, it’s affecting my relationship.
Before now, I haven’t needed to deal with the healthcare system very much - doctors, specialists, insurance, hospital sleep labs, local or online Durable Medical Equipment (DME) or Home Medical Equipment providers. Who does what? How good are they? How do they interact? How do I make it all work for me?
Where is the best place to get equipment (CPAP machine, heated humidifier, masks, software, etc.), at the doctor or sleep lab acting as a DME, at a local large national DME or local small DME or online DME, or some combination? Which DMEs does my insurance authorize? What does the DME charge and what percentage does insurance pay; what are the deductibles? Where can I get the best value, prices, and service? Is it sometimes more cost effective to pay out-of-pocket and shop online instead of using insurance and the local DME with its pricing and insurance deductibles? If I shop online, what about service; can I still get mask trials and fittings somewhere locally?
What are the costs that I need to pay on my own? What can I afford? Are costs mainly start-up, and how much is ongoing? What equipment is worth spending more on? Are there places where it’s okay to be economical, or will that hinder effective treatment in the long term? What’s the overall effect on my health and quality of life, the cost-benefit ratio?
What do I do when part of the healthcare system doesn’t work? What do I do when I run into inadequate treatment or lack of integrity? Why do I need to deal with incompetent people or dysfunctional organizations when I’m already challenged enough by my condition and with making the therapy work for me? Is there hope for large national Durable Medical Equipment providers’ improvement or is it hopeless trying to deal with them? Is it worth the emotional distress to deal with them? What are the issues? What is my moral obligation to bring attention to the situation so other people aren’t harmed by lack of information, misinformation, incompetence, or unethical treatment of patients and questionable business practices? Where and how can I help and be effective?
I still don’t feel as good as I used to feel before. The results vary a lot. Sometimes I’m up, sometimes I’m down. I haven’t achieved stability or consistency. I still get tired or depressed. I have more mental energy to accomplish things, but not the physical energy. Or, I feel a lot more physical energy but don’t know what to do with it anymore. I feel new levels of energy but don’t know how to handle it, how to integrate it into my daily life.
Have I achieved success with my CPAP therapy – is this as good as it gets? Or will my standard of success change, will the bar be raised, after I’ve been on CPAP for a while? How long does it take to feel optimal? What is optimal?
Was it me or was it sleep apnea? What past actions, performance, and psychological state was the impairment of sleep apnea, and how much was me or my character? Who was I? Does it matter? Even more important, now that my energy is returning, who am I now, at this age, with this condition? Do I need to reinvent myself? How?
What things were hidden from me because of fatigue and lack of attention? I’ve been neglecting things for years. What things have been harmed or have self-destructed because I didn’t have the energy to deal with them? What do I do about them now? What do I do about my health? Weight? Fitness? Relationships? Family? Friends? Work? Finances? Dreams and goals? Fun parts of my life? What have been the costs of this unknown, untreated ailment? What losses do I need to mourn? How do I get my life back? How do I play catch-up? What is possible? How long will it take?”
These are important life issues about loss, change, and rebuilding. Dr. Elizabeth Kubler-Ross studied death and dying and came up with five stages that apply to any loss, not just death. The stages aren’t always sequential; they overlap or people go backward as well as forward. The point is to not get permanently stuck in one stage, but to eventually reach the acceptance stage. It’s natural to be going through these stages in dealing with the many physical, psychological, quality-of-life effects of Obstructive Sleep Apnea (OSA); not only what happened to your body and mind while untreated, but to other aspects of your life:
Denial. Isolation. “This is not happening/did not happen to me.”
Anger. Blame. “How dare they do this to me!” “How did I let this happen?”
Bargaining. Unrealistic attempts to fix. “If I just do this, that will happen.”
Depression. Regret. “I’m so sad about what happened to (some aspect of my life). ” “I can’t bear to face going through this adjustment, or putting my family through this.”
Acceptance. Gaining a realistic perspective. This doesn’t mean you like it, but you do accept that it’s happening or that it did happen. “I’m ready to face it. I don’t want to struggle or deny it anymore.”
Maybe the next interim stage is mourning or grieving the deterioration or death of parts of your life, before you move on to adaptation or rebuilding.
Psychologist William Bridges in The Way of Transition describes three sequential stages of psychological transition during any change, which can be applied to adapting to CPAP and the consequences of OSA. Getting stuck in the first two stages is a block to successful transition. See http://www.wmbridges.com/
Endings or Saying Goodbye. Letting go of the way things were. Maybe mourning.
Chaos or Wilderness Zone or Shifting into Neutral. Uncertainty, confusion. Not knowing what’s what. There is lots of this in getting used to CPAP therapy.
New Beginnings or Moving Forward. Behaving in a new way.
If you think you might benefit from it, seek understanding help from a psychiatrist, psychologist, therapist, religious or spiritual leader, or healer. Patiently rebuild your new life. Take heart that you now are gaining energy to find out who you are and who you want to become. Successful CPAP users seem to be practical and pragmatic. The CPAP therapy proves itself through results, health, well being, improved quality-of-life. Their gratitude for the results of CPAP treatment overcomes their concerns about dependency on the machine.
Look for recent additions to these discussion threads on http://www.cpaptalk.com :
Singles and OSA (Obstructive Sleep Apnea):
Emotions and OSA:
Insomnia, Anxiety, Trauma, PTSD, Nightmares, Sleeping Pills
http://sleeptreatment.com/ and the book Sound Sleep, Sound Mind by Barry Krakow, MD
Depression and OSA:
Escaping from the sick role and OSA:
Sources: Based on personal experience with obstructive sleep apnea and gleaned from the collective wisdom of cpaptalk.com contributors.
Want more? See the peer coaching articles at http://smart-sleep-apnea.blogspot.com , http://www.cpap.com FAQ Learning Center, or search http://www.cpaptalk.com or post a message there.
Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.
© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com
Labels: acceptance, denial, depression, disability, fatigue, grieving, libido, misdiagnosis
posted by Mile High Sleeper Gal | 5:03 PM
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