My story is one that needs to be told because it is one so many people share; yet, we who share it feel like we are alone in a world that is slowing pushing us into obscurity. A couple of years ago I was an active wife and mother who spent every minute with family and friends. I went to my children’s functions, went to dinner with my husband, went shopping on Saturdays, and saw the occasional chick flick with my best friend. I was a dedicated teacher who took a large group of students and their families to Paris and London. Yes, I had migraines and I had seizures, but they didn’t stop me from enjoying life and from being an active part of the lives of those I loved. Then, in a matter of a few short months, my world would change in ways that I never imagined.
Over the course of a few months, my health rapidly deteriorated. I began to gain weight and swell, suffered daily from back and joint pain and other flu-like symptoms, was unable to sleep for more than a couple of hours at a time, couldn’t concentrate, etc. After being misdiagnosed and even dismissed by a family doctor who I had placed my trust in, I began to lose all hope. Eventually I had no choice but to resign which only added to my problems. Now my family was left to live on one income. My physical, mental and financial down spiral left me feeling useless and disconnected from everyone in my life. I was no longer able to do any of the things that I used to do and I still had no answers.
Finally, I was diagnosed with a rare pituitary disorder, fibromyalgia, and other related health problems. Sadly, by this time a lot of physical and emotional damage was done. Furthermore, I would soon find out that the treatments for some of these ailments led to further problems; it became an endless cycle of pain, loneliness and shame. Many who were once close to me tired of seeing me deteriorate and they could not adjust to my new limitations. After all, it wasn’t as if I had cancer or some horrible disease that would justify my absence at family functions, my extended bed stays and my crying spells. More and more I felt guilty for being sick, for showing any signs of pain, because I knew that they were right; there were so many people in the world suffering with diseases that were inevitably fatal. Therefore, I withdrew from everyone. Slowly, my world became lonelier and felt more and more like I was a burden more than a person.
Then one day when I was feeling like I was feeling particularly futile, I decided to do some research. According to Mosby’s Medical Dictionary, a chronic illness is any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning. I was astonished to learn that over one million Americans suffer from chronic, debilitating illnesses, many of which are overlooked, misdiagnosed or misunderstood by the majority of physicians. I found that I was not alone in my feelings of despair. In fact, it is uncommon for someone with a chronic illness to not experience emotional, relationship, and financial problems.
I finally realized that in order to heal I had to reach beyond what I already knew, beyond what was familiar. I couldn’t change other’s perceptions of my illness, but I could find new sources of support and, more importantly, I could let others know that they were not alone. For every chronic illness, there is a wealth of online resources including support groups. A great place to start is the website MedLine Plus which is a gateway to numerous credible sources of information. Another thing that is vitality important is to persist until you stop until he finds answers. In the meantime, keep copies of all blood work, x-rays and scans to avoid wasted time and expense. Get some form of counseling. Chronic illness and depression go hand in hand. Learn everything that you can about new treatments, nutritional guides, and new medications for your condition. Most importantly, find something to occupy your mind, preferably something you are passionate about. My writing has been my outlet. Other people knit, create websites, read books that they have always wanted to read but never had the time to indulge in, etc. Remember, you are useful and you are not alone.
Finally, if you are the family member or friend of someone who is suffering from a chronic illness, you are more important than you know. The support of loved ones can make a world of difference. You may be tempted at times to label that person as a hypochondriac or a chronic complainer, but look at the before you do, ask yourself if you have done everything that you possibly can to understand their condition. Ask them for information on their condition so that you can better understand how to support them. Ask yourself how you would feel if you had lost so much because of something you could not control. Most importantly, ask yourself how you would feel if you were at the lowest point in your life the people who you loved started walking away.It is so easy to love someone when times are good, but it is truly loving when you are there when they are far from it.