It's sometimes called invisible illness. An invisible illness would be any chronic condition and/or disease that isn't visible to anyone except on lab reports or occasional symptoms that pop up like the malar rash on the cheeks of SLE sufferers. Other than the patient, no one has a clue there is anything wrong and because of this many patients endure more than just the symptoms. They also endure foul treatment from others who lack the ability to understand and the level of cruelty varies.
This is my anonymous blog about this experience and how the Lord is helping me to use it in positive ways. I plan to use it as a journal, to give God glory, and also hope that it may offer some comfort to others that also endure it.
My health has been an issue off and on all my life. As is the usual case for many women with autoimmune disease, by the time I hit my thirties everything went up a notch with health woes. I was misdiagnosed over and over until my body experienced sky-high levels of inflammation and my family doctor was closed, thus I had to visit a different doctor. This different doctor was curious, ran some tests, and she caught all the indicators in action that pointed to two specific autoimmune diseases.
The doctor gave me the results over the phone, "I'm not certain, but it appears to me that you have Lupus and Sjogren's Syndrome." Then came the words "no cure, only control." I was in shock for a week. I visited a rheumatologist who agreed with the general practitioner's findings, but a third disease was and still is suspected. I went through the usual emotions one goes through when you find out you have autoimmune disease. It helped explain my unhealthy life but it didn't offer any real peace. I was upset, angry, and was growing bitter. After talks with the doctor, reading up on autoimmune disease, and much prayer, I felt more peaceful. My thoughts at the time were that we would find something to help control this, avoid the things that trigger it, and then I could go on with my life as planned. I looked at it as a small detour. The doctor even said that's how it would go. He said we would find something that will help control it and I could live a very normal long life like many lupus patients. However, after a year passed by and my symptoms were worse, my hope began to wane. I grew angry and bitter again. I found doctor after doctor that would grow frustrated quickly if they couldn't help me control the symptoms. I traveled far and wide for help. It was 2 years until I met my wonderful rheumatologist (a year ago now) who is showing me a new normal to live. However, I still struggle with this mysterious disease.
The focus of my blog is the relationship portion of the experience, not so much the science and medicine. I've been blessed with a husband that wouldn't leave me even if I told him to. We were joined at the hip after the first kiss over 23 years ago. We love each other dearly. Lupus did and still does put a strain on things, but rather than destroy... the problems that arise strengthen our bond instead. I wish I could say that all the relationships in my life have been loving and supportive. Chronic illness is a mirror that will not only show you what you're made of but also those around you.
My observations about the way people negatively react to those who suffer chronically are as follows...
Some people are simply narrow minded and need visual cues in order to understand. Others only have so much they can tolerate and then they're overwhelmed and prefer to keep you at a tolerable distance. And then there are those who don't believe each snowflake is unique and therefore if one lupus patient can endure and flourish, so should they all be able to withstand and do the same. All of which can make enduring chronic illness much more difficult. I knew and know people in all the above mentioned categories and time and again it's opportunity at forgiveness and patience!
I cannot count the times this illness has put to mind how Jesus wasn't believed and mocked...and also how He was left alone to pray at the darkest hour in the garden. None of us can ever know the full amount of agony Jesus endured, but I believe it's possible to experience just a small taste of it. That small part I've experienced has helped me to appreciate and love Him all the more and it has brought me closer in our relationship. It's sad but a comfort to know that Jesus understands this kind of pain. It's sad because of how He knows, but I greatly appreciate that He can relate.
And so I end my introduction to this blog, my first post, and will soon begin to journal about this experience of having unbelievable pain.
