Disability, Chronic Illness, and Spirituality

When I was diagnosed with Multiple Sclerosis inof disability is sparse, many thoughtful writers
the mid 1980's as a "diagnosis of exclusion" (see,have considered religion and spirituality to be
my illness had been mis-diagnosed for about 25crucial factors in adjustment to disability. BUT, we
years prior to this initial "diagnosis") I becamemust be careful not to "blame" God, as I did, or
VERY angry with God. "Why me", I asked. Whyto say that my disability is "God's Will, or
did I have to be the one you inflicted with thispunishment for something that I did". Saying these
terrible disease? Why couldn't you let the Doctorsthings isn't taking responsibility for our lives and
conclusively diagnose the condition? Why did Ifiguring out how to live a better life by managing
have to keep pretending that the Doctors weresymptoms. Instead, become reconnected with
mistaken, just so that I could live my day-to-daywhatever spiritual process/religion that you find
life?speaks to you, and live in the present with all of
I was asking the wrong question, you see. Insteadthe gifts that you still have. Being affiliated with a
of asking "Why me, God?", I should have beenspecific religion can sometimes help those of us
asking, "Why NOT me, God?" See, I was tryingwith disabilities find comfort in times of isolation
to become the "before the diagnosis" me, and Iand despair.
just could not do it. So, I went into denial, andWhile little research has been conducted on the
pretended that nothing was wrong. And, asinfluence of organized religion in the context of
anyone who is disabled, or who is living with adisability, studies on the general population have
chronic condition can tell you, living with a disabilitybeen positive. For example, a 28-year follow-up of
is hard enough without trying to become a palethousands of people aged 18-65 years found that
image of who one might have been without thethe individuals who attended at least weekly
disability, i.e., trying to fit into a world designed byreligious services had lower rates of depression,
and for able-bodied individuals, most of whom aresmoking, and alcohol use; they also tended to
equally dispirited. It took me quite a while (abouthave greater social support. Frequent attendees
10 years, actually) to come to the conclusion thatwere more likely to have engaged in other
I needed to stop being in denial; I needed tohealthy behaviors, including physical exercise. The
accept the condition, learn how to manageeffect on survival was good after other factors
symptoms, and get on with a quality life. Indeed, Iwere taken into consideration - their risk of death
needed to ask, "Why not me God!" For living inwas reduced by 34%.
denial meant that the ILLNESS DEFINED ME; IWhen disability is integrated as another dimension
was very unhappy; I was seperated from myof living, spiritual growth can take place. Please
spirituality; I was alone; and, I contributed toreread this red phrase again. It talks about
disruptive events in my life.integrating a disability or a chronic condition "as
It may sound corney, but I used my illnessanothe dimension of living"! It means, taking back
disability experience as an opportunity to get incontrol of your life; actually "living" again, and
touch with the needs of my "true self". That is, Imanaging symptoms as part of every day life!
decided to use this opportunity to take backAND, believe me, this is not easy! If you have the
control over my life; to recommit to myopportunity to acquire the Disabilitykey
spirituality; to discover and live a quality life; and,Workbook, you will see that I use my actual
to keep replenishing my "well" of personalcondition as an example for others to follow.
happiness and satisfaction by reaching out toWhenever I have to focus on my "Multiple
others in similar situations. I mean, who better toSclerosis Symptom Impairment Matrix", I get
discuss about living with a chronic illness thandepressed all over again. My brother felt bad
someone who does so on a daily basis, and notabout asking me about his "condition" because he
just some Researcher? Who better to create afelt that it was NOTHING compared to what I
Workbook (found at to assist others obtaincope with (more about his question in further
disability insurances to which they are entitled thanblogs). BUT, I only concentrate on the symptom
someone who used the process herself, and notprocess when I need to. Otherwise, I concentrate
just a theoretical social services person? Whoon symptom management, and on daily living as
better to create a website and an online blogquality a life as I can.
where we of similar condition can chat with, andIntegrating experiences of disability allows a
learn about extending our quality of life thanperson with a disability to recognize that suffering
someone practicing each and every day?and hurtful experiences are universal conditions. It
Does my spirituality help me in these endeavors?can be a time for you to discover untapped
You bet it does! Spirituality is a quality that goesresources; it can be a time where you decide that
beyond involvement in a religious organization. It isyou DO HAVE TIME TO play with your
a more basic construct. The highest level of ourgrandchildren, or read that book you have been
development is affected by our ability toputting off, or research your grandparents as
appreciate the sacred in life; to live each day withthey came to America long ago.
purpose, and to find a sense of meaning andSpirituality is a way for people with disabilities to
purpose for our lives. Spirituality invites each of usfulfill their potential and discover the possibilities
with disabilities and/or dealing with a chronicwhile learning to live with and integrate their
condition to live fully and in the present - indisability-related limitations and yet expand their
REALITY, the here and now. Not in denial, but inboundaries to experience the fullness of life.
control of our lives, learning about, managing, andAs part of my Internet research for this blog, I
living each day in quality!found the following website entitled "Faithability
Research suggests that people, and in particularReligion, Spirituality and Disability Resources". You
persons with disability, depend on spirituality andcan subscribe to the site, for free, and receive (I
religion as an important, if not primary, method ofthink - I haven't gotten anything yet) periodic
coping with physical health problems and lifeinformation. The site looked interesting, so here it
stress. Most research, however, has addressedis:
one's involvement in religion rather than spirituality.Once again, your comments, thoughts, and ideas
Although research about spirituality in the contexton this and other blogs are welcomed!