Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.
One of my favorite chronic illness quotes is, “My disabling chronic illness is more real than your imaginary medical expertise.”
When I was first diagnosed with Myasthenia Gravis, I was terribly ill. It began with a dropping eyelid which quickly led to generalized muscle weakness and fatigue. I went from a vital woman with two children, working a full time job and part time jobs, volunteering, taking care of my family and home and socializing to being almost bed bound.
Family, friends, people from church, parents of my younger daughter all reached out to help because my household was falling apart. I was so grateful. My husband and I were busy with doctors, medical tests, and trying to find the right treatment for me. And we were in a state of shock. Once we found out that I needed a serious surgery – a thymectomy (the removal of my thymus gland), we got a second opinion, did a lot of research and took a few weeks to think it over, the unwanted advice started to come in.
People who had no idea what Myasthenia Gravis was, all of a sudden knew someone who was cured by drinking this juice or taking that vitamin. Why not try acupuncture? You need your thymus gland to fight off infections. Come to this aromatheraphy session. Visit my chiropracter.
I decided on the surgery since time was of the essence. The thymus gland is close to the heart so it’s like having open heart surgery (the thymectomy that I had) and recovery was long and difficult. Most of my family and friends were understanding, but some took it upon themselves to have that “see, I told you” moment they were waiting for when they saw how weak I was. Of course, after this type of surgery, the Myasthenia Gravis was worse than ever, plus I developed sinus tachycardia. But those people who wanted to be right, wouldn’t listen to reason.
After about six months, I was fully recovered and on a drug regime that kept the serious symptoms at bay. The surgery was not meant to cure me, but to alleviate symptoms and reduce the risk of getting worse, like needing a trach, requiring plasmapharesis, etc. But not being cured, kept those “medical experts” happy and more advice came in. Soon, people were telling me it was in my head, that I was depressed, that I was lazy. And I wished that they could live a few hours in my body, not to get back at them, but for them to understand.
Sadly those people didn’t get it. They are no longer in my life. If I run across people now who try to dictate what I should be doing medically, I won’t get close to them. In the end, I’ve learned who my true friends are.
If someone is sick, ask if they want advice first. They may have all they can handle. The most important thing you can do for someone you care about, is to be there for them. Listening is sometimes the best medicine.