I’m a 35 year old single-working-mom with more than one autoimmune disease. My main diagnosis is Sjogren’s syndrome. I live with this diease daily; it has come to define aspects of me, despite my best efforts. Every day is a challenge, and new at that. I suffer symptoms that are managed with medications and supplements, but it’s the daily unknowing that is my greatest challenge. I never know from one morning to the next whether this joint will be stiff and pained, or if my eyes will be so dry I can’t blink, or maybe my neuropathy so bad in my leg that walking is burdensome. But, I don’t have time for any of that. I have to plow out of bed, meet the pain and other symptoms as they come, and go on with my day.
Because my ex is a #*$@, he isn’t in his kids’ lives. So it’s just me. I have help occassionally from friends and family, but it’s just me 98% of the time. If I don’t jump out of bed, get to work, and get on with things, they would not have the good lives they do. As it is, I know I have to put aside the pain and weakness. I have to meet every challenge with one of my own. The alternative is not acceptable. I cannot give in to my disease, I won’t let it win.
Sjogren’s isn’t rare, but I’m willing to bet most average people haven’t heard of it. I could explain the details, but I hate the details. Instead I try to focus on the good things in life – like the smiles and laughter I am greeted with as I pick up my kids from daycare. The “how was your day mom” I get in the car on the way home. And the “I love you” each little boy bestows in my ear before bedtime. Sure, the details make my life mine, but the bad ones are easy to ignore when the good details are so great.
It took many doctors years to come to a diagnosis. I waited and waited, then waited some more as this and that doctor ran tests and shook their heads. I knew I had something that was going to around for life, something like lupus or rheumatoid. But, until I was diagnosed, I had hope. I can pinpoint the exact feeling of despair that crept into my heart the day I was diagnosed. Sure, I knew what I had, but now it was confirmed – I would be sick forever.
Explaining my illness to my young children is difficult. Sure they know that mom can’t do all the things a healthy mom can, but they don’t understand the why. And there are days when I think how unfair it is to them. But I am heartened knowing that my kids will learn early that there are all different kinds of people in the world, with different abilities. Coping with mine is second nature to them now. I hope it will have prepared them to face challenges down the road.
I perceive myself as healthy at the moment. I have symptoms, but they are maintained. I have pain, but it is minimal. And I have issues, but everyone has issues! I have learned to live with my disease one day at a time.