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

©2019butyoudontlooksick.com
  • Nina

    Thank you for this beautiful post, Karen. It has helped me so much. May God bless you for your strength and beauty. <3

  • Cindi walker

    Karen, thank you for sharing your blessings….would you be interested in contributing to a book about chronic illness and the positive aspects??
    Let me know. Cindi Walker, [email protected]

  • James Reese

    Hello I am wondering if any of you have had an experience like my wife and myself have had. I put a short My Story on my website about what we did and how we succeeded with a very serious health crisis. It took world wide research and many years to win. If you have had something similar I would be interested in hearing about it. My site is http://www.thereesewellnesssytem.com. Its nice to hear from those who have been down the path and won. Thanks Jim

  • Dallandcass

    Dear Karen,   i just read your letter,  i have chronic lyme disease.–same symptoms as you.   a lyme literate physician are the ONLY doctors to recognize lyme.  i hope this gives you hope at getting better.  Karen Emerick

  • What a truly beautiful and moving article. It gives me great hope, having just realised I have Fibromyalgia. I do agree with you that the only way to get through any of life’s challenges is with a positive attitude and with gratitude for what we can still do and the pleasures we can still enjoy.

    By the way, the website above is by my mother, about coping with grief, including the grief of the loss of health which we all have to come to terms with. http://www.griefandsympathy.com

    Lesley

  • I’ve had lyme since the age of eight… with multiple co-infections. Since it isn’t a publicized illness and has next to no research I was left to fend for myself. In a spiral of fibromyalgic symptoms, anxiety, depression, tremors, insomnia and numbness in certain parts of my body my usual friends started to drop off after 18.. When it really hit me. Seven years later at 25 I’m glad they did, if someone cannot face mortality and morbidity they can piss off.

  • Bonnie

    Thank you for the wonderful writing. It goes a long way in helping me. I live with many invisible chronic conditions. I’ve been around the gamat in reference to awful doctors. And I don’t do a good job accepting my limitations. However, I found your writing above most helpful in so many ways.

  • Celeste

    So well put. I think that people with disabilities although life changes in many ways we learn to adapt and take on a “new” life! New ways of coping, new kinds of friends, new places of comfort. Sometimes it is for the better! I know the people I surround myself with now are much more genuine than those I was surrounding myself with before my illness. I feel blessed that I have become so humbled. My faith has strengthened, or I should say my faith has strengthened me and although I have bad days I am happy and content. Thank you for your wonderful newsletter. It is one of my blessings for sure!

  • nancy

    I thank you for expressing what so many of us feel. Right now I’m struggling with back pain that may be a fracture (have had 2 already), but the rest of my ills are somewhat quiet. I’ve got lupus, hypothyroidism, chronic hepatitis,Raynauds, osteoarthritis, and most recently gastroparesis. Life is definitely not as easy as it was, but I look at those, like you, who have so much more on their plates, and consider myself blessed.
    Blessings to you and your family!

  • Heidi

    This was exactly what I needed this morning! Thank you for putting into words what I cannot…

  • Laury

    Thank you for posting. I have RA, fibromyalgia, diabetes, asthma and more.

    I appreciate what you say about your husband because my husband worked full time, before he retired, and did laundry, shopping, cooking and cleaning. Now he has retired and he continues to do all this.
    Now that I have rheumatoid lung disease in both lungs, I have a lot less energy. My body is building nodules inside my lungs so I have to use oxygen most of the time. It is hard to accept but with his and other friends help, I will come out ahead.

  • Jen

    Thank you for sharing your story. I too understand exactly how you feel. I suffer form Lupus, RA, Fibro, Raynauds, and too many more to mention. I don’t work and I an constantly feeling like I need to “defend” myslelf to certain people. Because if you saw me you would never guess that I had anything wrong with me. I am thin and I look healthy…but I am literally falling apart.

    I think if one more person tells me “There are so many people out there, that are much worse then you” Im gonna fn punch them in the throat! Lol!! These are my friends, telling me this! I’m like..yea, yea, as I lay in bed yet, another day and fight the depression and pain.

    Like you, I am thankful that my major organs (so far) are ok. It just doesn’t make it easier. Being chronic, is no way…ANY BETTER! We have a life sentence, this is it.. and we are stronger mentally because these are the cards that we have been dealt.
    So, I just had to get that off my chest to all the unsick people out there who think it’s not so bad.

    Kisses!

  • Christina

    I’m so glad I had the opportunity to read your article this morning. Thank you, Karen.

  • cathy

    I just stumbled across this website and find your story so inspirational. I recently have been diagnosed with Crohn’s disease, MS and have diabetes. there are times in my life where I dont think I can take anymore but somehow find the energy to keep moving, I am still able to work but somedays find it hard to do so as I never know what is going to act up the Crohns or the MS> I am constantly tired and probably could sleep all day long but your story as shown me that there is light at the end of the tunne;

  • Jenny

    I have IgA nephropathy & I can’t have children I think that is the worse part. My kidney’s are at 13% so dialysis is just around the corner. I just want my old life back I hate always being exhausted. I also have the best husband in the world. He works full time but, he takes excellent care of me. Thanks for sharing yoru story Karen. I hope everyone on here feels and has a great day.