If the general public was asked the question, “What is chronic illness?,” I’m guessing the answers would range from technical, accurate definitions to “I dunno.” But if the arthritis community were asked the same question, I’d bet 90 percent – or more – of the answers would include the word “sucks.”
Arthritis is a chronic illness. Understanding the term and knowing the disease will never go away is tough, but it’s also one step closer to living a better life.
When I was first diagnosed at the age of 21, the diagnosis meant nothing to me. I did not go to the doctor because my joints ached; I went because of a knot on my ankle. Tests revealed a mass that had to be surgically removed. During the post-op visit, my surgeon reviewed the pathology report and told me I had severe rheumatoid arthritis.
Hearing the word, “arthritis,” literally caused me to shrug my shoulders and go on with my life as planned. To me, arthritis was an old persons disease and I had another 50 years before I’d have to worry about it. The entire time my surgeon spoke, I only listened with one ear. He explained the severity and the impact it would have on my future, but I still didn’t care. I had plans for my future and wanted to leave his office so I could get started.
However, I quickly learned I could not ignore arthritis. It attacked me and destroyed my body, along with the plans for my future!
The word “chronic” means it will never go away. Regardless of your age, forever is a long time! When the words, “for the rest of your life” are tacked onto the end of your name that means it’s permanent. There’s no going back to the way it was!
Arthritis is not limited to just joints. As I’ve said many times, it’s a complicated mind game. Since it doesn’t go away, most limitations will not get better, but they can get worse.
To me, accepting the changes brought on by my arthritis is the hardest part. Living with a chronic illness is like being robbed repeatedly! What’s even more frustrating is when I think I’m doing everything right, my abilities continue to be limited and more things that I like are being taken away!
Acceptance is an ongoing process for anyone living with a chronic illness and it triggers a multitude of emotions.
Several years ago when I was forced to accept the initial changes caused by my disease, I jotted down these words:
“I cannot change my condition, BUT I can change how I think and what I do, AND that will change how I feel.”
I know it sounds lame, but the message is powerful and it’s true! Those words have helped me to stay focused and make the best out of a situation that is out of my control.
Chronic illness is such a broad topic. Over the next few months, I’m going to write about Understanding Chronic Illness. Please share your thoughts and experiences and I will try to address them further. What was your reaction when diagnosed with an illness that never goes away? How do you handle the changes?
Thank you for your heartfelt post! I've been giving it some thought and want to address your concerns in the weeks/months ahead.
As you know, living with arthritis is tough! And in some cases, just as tough on loved ones. This week's blog, "Individual Stories" is about communicating within relationships. I do not claim to be an expert - only experienced. Every blog I write is based on personal experiences and how I've coped over the last 25 years. Hopefully you will find some comfort.
Keep faith my friend.
This is my first blog experience. I was officially diagnosed with ra 12 yrs ago. As a child I had pain and disfigured joints by kindergarten. My dad was one of those " you don't know what pain is". So I suffered and thought it was all in my head. I remember sleepless nights and days spent in a fog. Once I was on my own and working I got into a ra doctor. Started on steroids, dmards, and then biologicals. After a few years my stomach couldn't take anti-inflamatories anymore. I have had nearly 20 surgeries and am 36 now. I met and married a wonderful man. Struggled through 4 pregnancies and had 2 amazing boys. My oldest has autism and that is another story. Age and stress have gotten the better of me lately. I have gained 20lbs in the last year which is made exercise difficult.My depression is a problem for my whole family. Chronic constipation and stomach upset are making me miserable. I have a great ra doctor.But when I talk about depression and weight he tells me to walk 30min a day. I'd love to but I can't get myself off the couch most times. How do I snap myself out of this and get back to life? How do I help my husband help me? House work has gotten out of control, laundry is a monster. 10 yrs ago I was a career person who remodeled rooms on the weekend, took long walks and traveled with ease. Now most weekends I hardly get out of bed. Is this meds or do I have something else happening. Any ideas or words of wisdom from experience are welcome. Thank you.
Thanks for visiting my blog and I hope you share it with others.
My posts and insights are based on "personal experiences" from living with a chronic illness for more than 23 years. I've had many ups and downs and know firsthand what it is like on a day to day, minute by minute basis.
It is NOT easy!
Your post and insights are very consistent with what we learned from Rosalind Joffe, an expert chronic illness career coach who speaks to many of your thoughts in the online talk show that we recently launched, New Way RA, which is available at www.NewWayRA.com. Rosalind is featured in one of the segements speaking to chronic illness and shares many of your perspectives.
I hope you have an opportunity to view the show and share your thoughts.
Regards,
Brian
Brian Kenney
Centocor Ortho Biotech Inc.
Corporate Communnications
BUT, this was quite a wake up call. Hello...diabetes is a chronic illness and nothing to bat an eye at. So many things in our body are controlled by insulin or the lack of it.
Well, this wake up call has changed my life. Hopefully, before it was too late for me. I have changed my eating habits, have started exercising more, and changed my sleeping habits. I am excited to see what will come of all these changes. So far, the changes have included 10 lbs in 11 days. Yay!!!
Thanks for your blog, it is very thought provoking and a true blessing. Pam.
Leave a Comment