Wednesday, July 27, 2005

Disability, Chronic Illness, and Spirituality

When I was diagnosed with Multiple Sclerosis in the mid 1980's as a "diagnosis of exclusion" (see, my illness had been mis-diagnosed for about 25 years prior to this initial "diagnosis") I became VERY angry with God. "Why me", I asked. Why did I have to be the one you inflicted with this terrible disease? Why couldn't you let the Doctors conclusively diagnose the condition? Why did I have to keep pretending that the Doctors were mistaken, just so that I could live my day-to-day life?

I was asking the wrong question, you see. Instead of asking "Why me, God?", I should have been asking, "Why NOT me, God?" See, I was trying to become the "before the diagnosis" me, and I just could not do it. So, I went into denial, and pretended that nothing was wrong. And, as anyone who is disabled, or who is living with a chronic condition can tell you, living with a disability is hard enough without trying to become a pale image of who one might have been without the disability, i.e., trying to fit into a world designed by and for able-bodied individuals, most of whom are equally dispirited. It took me quite a while (about 10 years, actually) to come to the conclusion that I needed to stop being in denial; I needed to accept the condition, learn how to manage symptoms, and get on with a quality life. Indeed, I needed to ask, "Why not me God!" For living in denial meant that the ILLNESS DEFINED ME; I was very unhappy; I was seperated from my spirituality; I was alone; and, I contributed to disruptive events in my life.

It may sound corney, but I used my illness/disability experience as an opportunity to get in touch with the needs of my "true self". That is, I decided to use this opportunity to take back control over my life; to recommit to my spirituality; to discover and live a quality life; and, to keep replenishing my "well" of personal happiness and satisfaction by reaching out to others in similar situations. I mean, who better to discuss about living with a chronic illness than someone who does so on a daily basis, and not just some Researcher? Who better to create a Workbook (found at www.disabilitykey.com) to assist others obtain disability insurances to which they are entitled than someone who used the process herself, and not just a theoretical social services person? Who better to create a website and an online blog where we of similar condition can chat with, and learn about extending our quality of life than someone practicing each and every day?

Does my spirituality help me in these endeavors? You bet it does! Spirituality is a quality that goes beyond involvement in a religious organization. It is a more basic construct. The highest level of our development is affected by our ability to appreciate the sacred in life; to live each day with purpose, and to find a sense of meaning and purpose for our lives. Spirituality invites each of us with disabilities and/or dealing with a chronic condition to live fully and in the present - in REALITY, the here and now. Not in denial, but in control of our lives, learning about, managing, and living each day in quality!

Research suggests that people, and in particular persons with disability, depend on spirituality and religion as an important, if not primary, method of coping with physical health problems and life stress. Most research, however, has addressed one's involvement in religion rather than spirituality.

Although research about spirituality in the context of disability is sparse, many thoughtful writers have considered religion and spirituality to be crucial factors in adjustment to disability. BUT, we must be careful not to "blame" God, as I did, or to say that my disability is "God's Will, or punishment for something that I did". Saying these things isn't taking responsibility for our lives and figuring out how to live a better life by managing symptoms. Instead, become reconnected with whatever spiritual process/religion that you find speaks to you, and live in the present with all of the gifts that you still have. Being affiliated with a specific religion can sometimes help those of us with disabilities find comfort in times of isolation and despair.


While little research has been conducted on the influence of organized religion in the context of disability, studies on the general population have been positive. For example, a 28-year follow-up of thousands of people aged 18-65 years found that the individuals who attended at least weekly religious services had lower rates of depression, smoking, and alcohol use; they also tended to have greater social support. Frequent attendees were more likely to have engaged in other healthy behaviors, including physical exercise. The effect on survival was good after other factors were taken into consideration - their risk of death was reduced by 34%.

When disability is integrated as another dimension of living, spiritual growth can take place. Please reread this red phrase again. It talks about integrating a disability or a chronic condition "as anothe dimension of living"! It means, taking back control of your life; actually "living" again, and managing symptoms as part of every day life! AND, believe me, this is not easy! If you have the opportunity to acquire the Disabilitykey Workbook, you will see that I use my actual condition as an example for others to follow. Whenever I have to focus on my "Multiple Sclerosis Symptom Impairment Matrix", I get depressed all over again. My brother felt bad about asking me about his "condition" because he felt that it was NOTHING compared to what I cope with (more about his question in further blogs). BUT, I only concentrate on the symptom process when I need to. Otherwise, I concentrate on symptom management, and on daily living as quality a life as I can.

Integrating experiences of disability allows a person with a disability to recognize that suffering and hurtful experiences are universal conditions. It can be a time for you to discover untapped resources; it can be a time where you decide that you DO HAVE TIME TO play with your grandchildren, or read that book you have been putting off, or research your grandparents as they came to America long ago.

Spirituality is a way for people with disabilities to fulfill their potential and discover the possibilities while learning to live with and integrate their disability-related limitations and yet expand their boundaries to experience the fullness of life.

As part of my Internet research for this blog, I found the following website entitled "Faithability Religion, Spirituality and Disability Resources". You can subscribe to the site, for free, and receive (I think - I haven't gotten anything yet) periodic information. The site looked interesting, so here it is:

http://www.faithability.org/

Once again, your comments, thoughts, and ideas on this and other blogs are welcomed!


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