Speaking Of The Unspoken
“Living With Autoimmune Disease”
By: Elizabeth Price
It was a dark and rainy night… Just kidding. My name is Elizabeth and I have Mixed Connective Tissue Disease. For those of you who don’t know what that is, I’ll explain. MCTD is defined medically by Wikipedia as “An autoimmune disease in which the body’s defense system attacks itself.” Such a simple description for such a complicated disease. You see, MCTD is typically three autoimmune diseases in one; as if one wasn’t enough. Basically in a nut shell, my white blood cells mistake the flesh of my joints and organs as a threat and as a result eats away at them or causes them to deform or deteriorate. These are all just fancy ways of describing medically what this complex and hard to diagnose disease really is. Let me just tell you what the disease is for me because no two people with MCTD have the same symptoms, outcome, or treatment plan, but before I explain that, let me first say this blog is not only intended for fellow sufferers but also to help those without to understand what it is like to walk a day in our shoes.
Mixed Connective Tissue Disease starts in the morning when I have to getup and get ready for work. It takes me quite a bit of will power to get motivated as my body is stiff and the fatigue is never ending. Once I’m up, I wake my two kids and prompt them to get moving and ready for school. I’ll spare you the details on their morning antics, though humorous at times. Once we are out the door and on our way to our daily destinations, I realize I’ve forgotten about ten things back at the house. Typical mommy brain. As my son is stepping out of the car I realize his shoe is untied and being that he can’t tie his own shoes, he looks to me to do it. He doesn’t know how bad my hands hurt and has never noticed the way my thumbs are deformed which makes simple tasks like this one very difficult. Okay, everyone is where they are supposed to be so now I’m off to work. I’m a special needs teachers assistant which pretty much boils down to teacher, nanny, maid, best friend, cook, personal stylist or fashion coordinator, and best job ever. It is such a great job, however at times it’s difficult to place all of your focus on the task at hand when your heart is palpitating so hard for no apparent reason and your turning ghost white while fighting passing out all while making sure no one notices because let’s face it who needs that risk at work. Not to mention the florescent lights in the school give me a daily massive headache. Its hard for me to read the board even though I wear glasses. My vision changes on a almost daily basis depending on the headache severity and the lights. After fighting passing out, straining to read, and finding special ways to do tasks without pushing my finger joints out of place, its time to go home. Usually by this time my hip joints are now on fire because they pop and grind with every step I take. While I’m walking to my truck Ms. Mary wants to stop and talk to me about the pep rally on Friday and all I can concentrate on is trying not to burst into tears because I’m literally in that much pain. I’m finally in my truck and on my way home to……..clean. Did you think I was going to say relax? I’m a single mother of two young energetic kids. There is no such thing as relaxing. I get home, clean my house, get the kids off the bus, make dinner, give baths, do homework, hugs, kisses, and kids all ready for bed. Finally its time for me to lay down, and while you may think this is the best part of your day, for me it is often the worst. Once my pain stricken body is laying at rest the pain amplifies by about 15% more than when I’m active. When I am active I at least have tasks to place my mind elsewhere. I often lay uncomfortably in my bed fighting tears until I either get up because I can’t sleep or I finally drift off. Insomnia is such a great part of this disease.
My point here is not to complain. Most people who know me don’t even know I am sick. I am what I call a silent sufferer. I choose to live in silence with MCTD because above the pain and the 35 other symptoms I haven’t named off, I truly believe the worst part of it for me, is the lack of understanding, care, or kind words I’ve received. I don’t want pity or sympathy but I assure you nothing irks you more than someone saying, “you don’t look sick,” “you can’t have that many symptoms,” “you must be a hypochondriac,” “you’re too young for all that,” “well I’ve never heard of that.” Believe me when I tell you that it is very real. People don’t always believe what they can’t see. If I were to write out the two pages of the symptoms I struggle with daily and read them to the average person they would first instinctively and silently think I’m dramatic and second respond with a usually not so witty reply. I wish I didn’t have to take trips to the cardiologist, rheumatologist, orthopedic surgeon, neurologist, nephrologists, gastrointestinal and primary care doctor. And though the injections I receive in my hands and hips offer me temporary relief days after the injection site has healed, the braces I’ve been instructed to wear daily offer me little comfort in daily activities. Just remember that a kind word goes a very long way. Don’t be so simple in thinking that diseases like this are made up or all in the mind. I hope you never have to walk a day in our shoes.
Stay strong fellow sufferers.
Speaking Of The Unspoken
Your story description detail this disease perfectly. I can relate to your story very, much. And if ctd isn’t enough I also have polycystic kidney and liver disease. Thanks your story.
Thank you for your story, I understand very well as I am the same as you ! Love and pain free day to you.
Thank you Cynthia. I am you! Well, not exactly because my children are grown, but your day sounds like mine. I’ve had MCTD diagnosed since 2013 and over the last year it is getting much worse. I’d like to communicate. How might we make that happen?
Funny opener for a not so fun disease,
Recently diagnosed. Both thumbs are fused. Worked in as bedside nurse until I could. Been plagued with joint issues for past 15 years. Have one teen. Complicated pregnancy. Followed by neuroma surgery. Plantar fasciitis, fallen arches, partial knee replacement, shoulder surgery x3, carpal tunnel. I’m 53 years old