Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.
For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it's amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis. I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, "My son is 8. I need at least 10 more good years. What can I do to make this happen?"
Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.
Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.
I have never given in and allowed it to consume me.
But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.
"You've just given in to your illness," I have heard from both strangers and friends. "You need to fight it more." This is often followed by their specific advice on what I need to do to "fight it."
What defines "giving in" to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.
1. We are not using the alternative treatment of product that they sell that will make it all go away.
My husband was recently berated by a friend's wife, "We are so mad at you guys!"
"Why?" he asked.
"Because you won't try the water!" she replied.
Honestly, I've done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn't like chocolate?
2. We are seeking health assistance from doctors or medical specialists.
A friend on recently posted on a social network that he cured himself of a disease by ignoring the "mumbo jumbo of doctors" and asking his dad for advice. He claims he "never gave in." In his eyes, because I am seeing a rheumatologist with "MD" behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.
3. We are pacing ourselves.
Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we'd planned on because we are in deep pain, we frequently hear, "Oh, you are just giving in to your illness. You are letting it control you." No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.
4. are not where someone wants us to be spiritually.
We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of "Don't worry, be happy." We are told that we are allowing the sin in our lives to get the better of us and it's causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well ... and that God knew that!
5. We are not doing physical activities that we are expected to do.
If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, "I chose to never give up." I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.
Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are "giving in" and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.
If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, "I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?"
Lisa Copen is the author of "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. Visit http://IFoundLisaAtHuffPost.com to for the current featured free download that will help you or someone you love cope better with chronic illness.
Follow Lisa Copen on Twitter: www.twitter.com/lisajcopen
I fought it with bellydancing, creative projects and achieving amazing things at work. I was getting better in July 2010 but then I physically lost my voice which was fixed by a wonderful doctor (Dr Michael Pitman) in March this year and I can speak again.
Two weeks ago, I was told that my thyroid is out of balance again. I was very sad and felt much anger but decided to continue living my life day by day. I bellydance everyday. I also started taking special bellydancing lessons - zills and drums. I began singing lessons too. Hearing my singing voice with all the notes was truly amazing and liberating especially when the last time I sang was 2007. Through singing and bellydancing made me realize there is hope and I have strength again to continue with my fight of GD. Continue living and achieving great things daily is the best relieve.
No one really knows what it's like to live in chronic pain. Especially in these "mean" times.
I've composed a list of 100 excellent websites and blogs for CFS and fibromyalgia patients. I hope somebody finds this useful-
http://www.b12patch.com/blog/fibromyalgia/100-best-sites-for-fibromyalgia-or-chronic-fatigue-information/
This is from a vitamin B12 patch page- incidentally, there's an unusually high correlation between vitamin B12 deficiency, CFS and fibromyalgia.
Thank you for allowing my comments.
I know through my illnesses I am able to help others, those who share my faith or not. My grief for the losses I've suffered in the past twelve years are not visible, either, but I know I am doing my best - yes, my best - to not give up on life. I am still an active woman who supports my community and places such as Rest Ministries. I still have goals, although rearranged and more lax than before. To me, I see those afflicted with chronic illnesses as beautiful, and when my healthy friends are sick, they realize the grace needed for people just like me.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
And people, PLEASE encourage your lawmakers to set aside money for researching autoimmune disease: http://www.aarda.org/advocacy_issues.php