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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 © 2005

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 !

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