The Blessings of Chronic Illness
At the time of this writing, it is a few weeks before Thanksgiving in the US. Each day, I must fight an overwhelming array of symptoms caused by Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism, diabetes, celiac disease, gastroparesis and periodic limb movement disorder. I am learning to cope with new medication that is fraught with unpleasant side effects. I am in the midst of the disability application process and have no income. And yet, I know that I am blessed, without question. How can this be?
First of all, I have acquired a perspective about myself that not many healthy people have. Many people are so caught up in the comings and goings of the day that they don't realize just how wonderful it is that they are able to get out of bed, complete their tasks without pain, remain focused and alert as necessary, eat what they want- when they want, and sleep deeply when their day is complete. But most chronically ill people no longer take these things for granted. And we may in fact through our social interactions know people who are even sicker than we are. So while it is unfortunate that there are limits to my functioning, I know it could be much worse and I am grateful that it is not. I can fully appreciate my good fortune at being able to get out of bed most days. I can celebrate that while my digestive system is in a shambles, my heart, kidneys and liver are all just fine and are serving me well. I choose to be happy about what works and do the best I can with what doesn't.
There are times that chronic illness forces an independent person to ask for and accept assistance. I was one of those independent people. At first, I was ashamed that I couldn't open a door, carry heavy bags or open a package. But then I realized that some people enjoyed helping me out and feeling useful. So now I graciously accept help with a smile.
A few weeks ago, I was stranded on the curbside of an unfamiliar airport when my ride left before I discovered that there was no curbside service for my airline. The agent for a competing airline was unwilling to help me, and I was stuck in a wheelchair trying to figure out how to drag my suitcase and propel my chair indoors at the same time. Luckily, a fellow traveller saw my predicament and graciously offered to pull my suitcase alongside hers to the ticket window. And after I headed to security screening, another traveller noticed how slowly I was moving my wheelchair and offered to push me. He stayed with me through the whole screening process and got me to my gate. Neither of these people had to help me, and I was amazed that they were so willing to go out of their way for a complete stranger when they had places to be. These are just two examples of how blessed I am.
I am also blessed with people who are not strangers who make my life easier. A few days ago, a friend came to my house with a couple of movies on DVD because she knew I was too sick to go to the theatre. And even though I'm not a good cook, she didn't mind eating at my house because I didn't have the energy to go out to eat. We watched Harry Potter to our hearts' content and had as good a time as if we had gone out. I know a lot of people with chronic illness lose friends because they can no longer do social things outside the home. But the best friends find other ways to be entertained.
Not all of our friends have to be human. One of my best buddies is Chip, the world's most spoiled English springer spaniel. He's actually delighted that I can no longer work because that means I can spend more time with him. He's unusually empathetic even for a dog. He knows when I'm in pain, and he'll come over wearing his best "I'm sorry" face and give me a kiss. He seems to have forgiven me for no longer being able to walk him. Sometimes when I'm having a hard time, Chip will come up to me and lean on me gently, his way of giving me a hug.
I am blessed to have found a place of worship where I am comfortable and where I am accepted. The temptation can be great for those with chronic illness to believe that they have been cursed with their particular ailment or ailments, that their creator is punishing them, that they must have done something to deserve being sick. But my place of worship encourages me to find my place in the world, no matter what my circumstances are, and that is important to me.
It has taken me years, but I have managed to find a team of good doctors to treat my ailments. It helps that I live in a major metropolitan area with lots of choices in medical care. I've been able to get second opinions on the diagnoses/treatments, appropriate testing, and most importantly, doctors who believed the extent of my invisible ailments. Probably everyone reading this knows the frustration of going to a doctor who tells you that you aren't really in pain or that you must be exaggerating the fatigue you feel. I had that experience several times too, but I had the opportunity to find competent doctors to replace the ineffectual ones.
Probably the biggest blessing in my life is my husband. Truly supportive spouses are probably not in the majority. But my husband, in addition to working full time, willingly does all the housecleaning, laundry and yard work and walking Chip because he knows if I tried it, I'd be in tears from pain. He pushes me in my wheelchair so I can go places that usually require a lot of walking. A couple of months ago, he took me to the zoo and pushed my chair for three hours while I took photos of the animals. He drives me to appointments and shops for me. He spoils me. All I can offer him is my eternal gratitude, which, fortunately, seems to be enough.
And I would be remiss if I didn't mention the importance of online support. Thanks to the wonders available via computer, I can still be useful and productive. I can teach others about chronic illness, console someone recently diagnosed, commiserate with someone about the daily aggravations of fibromyalgia and occasionally even cheer someone up. If that isn't a blessing, I don't know what is.
Written by Karen Brauer © 2008, butyoudontlooksick.com
Comments
Thank you for taking the time to write this , I have gastroparesis , feel like crap most of the time , someone directed me to this site, i get the comment all the time , but you do not look sick , how can you look sick when you are nauseated 24/7, i eat from a feeding tube , do not eat by mouth at all, how that does not look sick i have no idea , i have come to the conclusion , you learn who your friends are, recently last week when i was in intensive care, fighting for my life, no one coworker , i work at that same hospital btw , came to see me..... so basically, the only one that came to see me was my 16 yo daughter.... i get so down , wish and pray to die , you are not supposed to live life this way , it is unnatural to not eat and be fed through a tube , yes i see a shrink for the depression, see a pain doc for the chronic pain .... it helps , but does not help the day to day interactions and reactions at work ... thank you for being here !
Posted by: tracybingham | June 26, 2008 11:13 AM
Lovely post, Christine. I have T1 diabetes and Wegener's Granulomatosis. My conditions allow me the luxury of counting my blessings every day. Your post helped me put things in perspective today--thanks!
Posted by: Denise | November 10, 2008 07:36 PM
keep up the work and I was diagnosed in 1996 with MS and its been a blessing all the way.
I have a new business - I am not a Mess! and a DVD that you will totally love..
perhaps we can do a giveaway..
Please check out my links
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Blessings
Posted by: hillary rubin | November 10, 2008 08:40 PM
Karen, This writing really resonated with me. It's so easy to get down thinking about what we can't do. I try very hard to focus on my blessings and what I can still do. So this article was a wonderful reminder to keep it up! Thank you so much!
Posted by: Lynn Russell | November 11, 2008 11:06 AM
I can think of only one thing that fibromyalgia has given me.
Direct feedback on the everyday disfunctional harassment of American society. I don't put up with the mind games or the BS any more. I don't bother keeping people who play mind games in my social circles. I walk away from situations that are toxic far more easily than most people.
Fibromyalgia is literal feedback on my attitude. If I fall into any of the common everyday self defeating attitudes most people get shoveled in by way of schools and advertising if not getting it at home, then I get sick. Real sick. Too sick to do anything.
If I keep my head and stick to reality, seek out people who do not get vicious or cruel in their personal interactions, then I literally get more time to enjoy their company online and more time to do the things that are within my reach.
Fibro is a feedback system that never fails to warn me of bad situations. It's caused me no end of trouble in life, but if I hadn't had that feedback I might still be enmeshed in dozens of bad interactions.
Robert
Posted by: Robert Sloan | November 11, 2008 11:20 AM
You are truly an inspiration to all those who feel sorry for themselves. After 30 years ol living with Lupos + all the secondary diseases that come with it--I have passed the why me stage. Your article will help many of us!
Posted by: Patrice Howe | November 11, 2008 01:43 PM
It is so encouraging to read what you have written. After almost 3 years I haven't gotten to this point just yet. I am no longer able to work and did lose all of my friends when I became ill, even after being a supportive friend to them along the way. I struggle spiritual, but have a supportive family who tells me I did nothing wrong to deserve this! I was pushed by my family to give up ALL pain meds because of my inability to focus, rather than change meds. So, I fight the chronically severe pain, the chronic fatigue and many other issues, with many people saying "you look so good". I DON'T FEEL SO GOOD! Thanks for the encouraging words - I am hoping to get to that place in the near future!
Posted by: Maureen | November 11, 2008 01:55 PM
Living well with chronica illness forces us to check in with what is possible in our lives. To not live well is to dwell on the negative.
I live with a disabling disorder, inoperable of the thoracic spine. It compromises my spinal cord when and if I get to active, and gives me on going neuropathies and pain.
I have wonderful physician support once the obscure diagnosis was reached, and am exceedlingly grateful I still have spinal cord function.
I have learned to do things differently, developed new hobbies where I could not adapt them and agree that on line support is wonderful.
It is the only life I have and therefore I chose to find ways to enjoy the gift.
I don't look sick either and it was an obscure but significant disorder. There were many disparaging remarks, mis-diagnoses, and outright psychological dismissal. I was even accused of drug addiction where I had no prescriptions and no access. So all of this misdirection is about them not me. Once I found competant care, then we could get on to managing the issues.
Living my life in joy was not complicated, I just removed those who rained on my parade, and continued to look until I found appropriate medical care. Stay positive, folks either run toward you or run away.
Nancy
Posted by: nancynursez637 | November 11, 2008 07:17 PM
Thank you Karen for such powerful words. I have struggled many years with endometriosis, fibro, and now RSD. I look at my life in two stages--before I got sick, and after. I am still grieving the death of who I was. This is NOT an easy process. Family has a hard time understanding, how do you expect friends to? Physically is easier to grasp for me than spiritually--I am still coming to terms with that. And yet I use to be a catholic school teacher?! Without my husband I would not be here today. If I needed the house moved, he would move it--but emotionally he doesn't always get it. This website has helped me in so many ways! Its people like you and Christine who will help me on my way! Thank you again!
Posted by: Sandy Goodfellow | November 11, 2008 11:54 PM
I have many of the same blessings you posted. I have a husband who is similar to yours, except that mine drives a bus for a nationwide company and is gone for days at a time. But, when he is home, he is awesome. We have a grown daughter and 2 young grandsons who live nearby and help me a lot!
I have Fibro, Rheumatoid Arthritis, T2 Diabetes and Have gone blind in my right eye due to disease in it. BUT, I am blessed with friends who stick by me, cry with me on bad days and rejoice on the rare good day. I am in a church that supports me and loves me. I have God, above all else. He is my redeemer and salvation. Praise God!!!
Posted by: momo2two@suddenlink.net | November 12, 2008 08:39 PM
Thank you Karen for the beautiful post. I also, have found that a lot of my closest friends are online. Boy what an eye opener having an invisible illness can be! I have learned who my true friends are and that life itself in its simplest form is a real gift. My husband is a blessing straight from God. He's been right there beside me fighting for me when I didn't have the energy to, helping me do the things I can't, and being a loving shoulder to lean on when I need to cry. I rejoice in the ablity to wake up every day and have more time with my husband, kids, and friends. Isn't it wonderful that by society's standards we all should be sad, depressed, etc but we are actually the ones who have more! We can appreciate all the more the little things that make life great, and I thank God for having that!
Posted by: Lizzy | November 13, 2008 01:12 PM
I hate having Fibromyalgia and all my other illnesses, although I have matured and changed my life positively because of it, I still regret not having looked after myself sooner. For a very long while I cursed the gods for all the wrong things in my life, I gave them the credit for the things I worked hard for. Being an Athiest has really changed my life, I get the joy from the things I work hard for, and blame only bad genetics for the pain and society for creating the things that disable me. I am happier as a chronically ill Athiest, knowing there is no divine plan, because this is the one and only chance you get to make the most of your life, I wont let my illnesses stop me.
Posted by: Claire Smith | November 15, 2008 11:37 AM
I don't feel blessed so much.
I am dissapointed that I am not uplifted by this commentary. I wish I were. I do really like the title "But you don't look sick..."
My wife is my Primary Caregiver. She is exhausted and also struggles with her own medical issues. I feel like a helpless child physically and emotionaly. I am on waitlist for in-home care. Last week my wife was ready to drop me off at a nursing home. This is after i disclosed to the occupational Theraist that one of my recent injuries was caused by my wife- the OT told me she has to file an abuse report. Today my wife states she make aan 18 month committment to try to work things out and get support servises and NEVER injure me on purpose again. The 18 month committment is cause we just had Dierect TV installed and the contract is 18 months.
Blessed? not so much. C
Posted by: Cassandra White | November 28, 2008 09:33 AM
Thank you so much for sharing this with everyone. It is so difficult to explain chronic disease to my family and others.
Only moments ago I was trying to explain to a woman in my online support group how gratitude helps me. You explained so well.
Thanks for sharing this.
Posted by: BJ | November 30, 2008 06:33 PM