"It's Just Two New Words"
Secondary Progressive. When your MS diagnosis now includes those two words, life changes. Jennifer Digmann shares her story in part one of our series "Letter to My Just-Diagnosed SPMS Self."by Jennifer Digmann Patient Advocate
Be honest, you always knew something was wrong. Something was a little off. Sure, it may be hard to remember all those years ago, but you definitely knew there was something.
That unexplainable numbness in your hands and feet. An occasional fall over nothing. The unrelenting tiredness and fatigue. How your primary doctor tried to explain it all away because you were a busy sleep-deprived senior in college. She convinced you that the numbness in your feet merely was your poor choice of inexpensive shoes that gave you no arch support—a primary problem that comes when you choose fashion over function. And the numbness in your hands? You were writing too many papers and exams, she explained. You remember her saying that as soon as you graduated, when the pressure was off, “You’ll be fine”?
But then, after graduation and moving an hour away to the Detroit area for your first grown-up job as a customer-support specialist, things didn’t magically disappear. Remember how one night at work your left eye wouldn’t move and you started seeing double? Well, the doctor couldn’t just explain that away. Eventually, but rather quickly, you were diagnosed with multiple sclerosis. Remember feeling somewhat relieved by your diagnosis, because deep down you always thought there was something?
At 23, you were diagnosed with a lifelong chronic illness, but you handled it. You were scared, confused and overwhelmed. You met doctors and other people living with MS, asked lots of questions, read books, joined a local MS support group for people of all ages and disease progression, and tried to live a life that minimized the magnitude of your chronic illness.
You were stable. Enjoying life as a friend, bridesmaid, sister, and daughter. Doing as much as you could but always mindful of not overdoing it when it came to things like sitting out in the heat or staying out for last call at the club. Trying each of the three then-available disease-modifying treatments to find which would best slow down the disease progression. Exploring new diets, vitamin regimens, exercise programs.
Those first few years flew by. But then you started feeling a little off again. The numbness intensified. Fatigue persisted even after the best night sleep. More falls for no reason. Maybe you were dealing with stress again. Chronic illness is not for the weak, right?
There were more physical-therapy sessions and several courses of IV steroids in the hopes of getting you back to baseline. But baseline kept inching further and further away, and it seemed like something was going on.
You changed neurologists and started a more aggressive immune-modulating treatment for your MS so that it would all be fine.
Then your new neurologist tells you, “Your disease has progressed.” You hear what the doctor is saying, but it is not until you read the words “Secondary Progressive MS" on your medical forms that it truly sinks in. It’s SPMS, but deep down you already knew that. Didn’t you?
Once again you are shaken and scared, but you can and will handle this. After all, it’s just two new words—secondary progressive—at the core, it still is multiple sclerosis.
First things first, get back to those basics that you relied on when you were first diagnosed. Reach out and search for answers. Talk to your team of family, doctors, and friends. Your questions are rooted in the knowledge you have already gained since your original diagnosis, and you are more prepared for the answers.
Understand that your disease is progressing. It is going to be frustrating, upsetting and tough. You’ll worry about walking, wheelchairs, and disability. All the while, trying to reassure yourself that you can handle this. Just look how far and how much you have already dealt with and overcome.
Fortunately, disease-modifying treatments now are available for people living with SPMS. You have choices. But above all else, focus on maintaining and appreciating your health; whatever that looks like. Sure, you may not be as active or independent as you once were, but you must continue your fight with this monster.
Savor the good, because there still will be good days (like when you marry a man that uniquely understands and loves you) and many small victories. Continue to have faith and believe in yourself. You didn’t get a choice in your disease progression, but you do have a choice in how you live with it. And remember there is power in that.