Friday, December 2, 2011

A Personal Note - "You Don't Look Sick"

I’m not one to put my personal laundry out there,
but today I feel the need to rant a bit.

I have Lupus, a “sub-category” of Connective Tissue Disease and at times my body is racked with pain to the point of sitting and doing nothing hurts even more. Most people don’t know I have it, and many that do know don’t understand what it is.... because I don’t look sick.

"My immune system attacks itself. What does yours do?"

What is Connective Tissue Disease?
Connective tissues are groups of fibers and cells that “connect” the framework of the body and literally hold it together. Their functions include cushioning, protecting, supporting, insulating and strengthening the body’s tissues and organs. Examples of connective tissue are tendons, ligaments, cartilage, blood, bone, and the dermis of the skin. Because connective tissues exist in so many structures of the body, disorders of these tissues may involve a variety of symptoms, including pain and dysfunction in different areas of the body.
Overall, treatment should include a lifestyle plan to optimize health and reduce symptoms. A well-balanced nutritional plan, regular physical activity, plenty of rest, and routine testing to monitor the progress of disease will aid in controlling this disease.

Complications of connective tissue disease include:
■Difficulty performing daily tasks (uh... like opening the lid to the pancake syrup or snapping my jeans.)

■Increased pain and dysfunction (hurts to walk, move, breathe)

■Joint deformity and destruction (don’t even want to think about it)

■Severe discomfort or pain (due to side effects from pain killers, secondary medications may be needed to treat those)

Basically, there is no cure... the pain will only get worse. One may have to fight depression if the thought becomes to consuming. Suicide rate is high; I guess you could say lack of relief from pain and lack of compassion can make a person literally go crazy.  "Brain Fog" is hard to explain when others get upset with your lack of attention and forgetfulness. 
A chronic inflammatory condition caused by an autoimmune disease. May cause depression, fatigue, hair loss, sensitivity to sunlight and changes in weight.
May cause optimism, excuse to stay in bed, experimentation with new hair styles, getting to flaunt your Derby Hat all year round and more shopping sprees.

A positive goal is to live a life of some kind of remission and have a strong network of people who will be there when things get tough, even though you don’t look sick - they know when your body and heart hurt.
I hope this helps and if you know of someone with CTD, please share this with others. Sometimes the pain is so bad I want to cry, but even crying hurts. However, what wounds the most is when I’m in pain and others look at me as if I’m lying and say, “You don’t look sick.”



Visit the Lupus Foundation of America

Buy a Fighting Lupus t-shirt


1 comment:

June M. said...

Way to go! This is a very serious disease that can attack any joint, organ, part of the body. Many people in my family suffer from this disease and other autoimmune disorders. People should really learn more about the disease before making comments.

And it is perfectly understandable to get frustrated. I had an accident a few years ago that damaged my back and hip. It has caused chronic pain and deterioration of my spine that gets worse over time. People have wanted to give me suggestions on what I should do, or say "I saw this on t.v." etc. I have been known to get frustrated and tell people that I have a family doctor and one for my back, I don't need another. Or ask what medical school they went to. Chronic pain can limit your patience with rude people.