Dear Dan: A Letter to My Just-Diagnosed Self
One writer reflects on the biggest lessons he learned from being diagnosed with multiple sclerosis at a young age.by Dan Digmann Patient Advocate
It feels pretty raw right now, huh? The four words from your newfound neurologist are circling around your head, but they haven’t truly started to sink in.
"You have multiple sclerosis."
As a professional writer, never have you crafted a sentence that carries such an everlasting impact. MS isn't a common cold that will just clear up in a few days and life will return back to normal. This is a chronic, progressive disease that you will have for the rest of your life. That is, unless or until researchers discover a cure.
Less than five years since you graduated from college, and here you are—27-years-old—sobbing in your home's sparsely furnished spare bedroom, wondering what the hell just happened. How did this happen? How did you – a young man – get diagnosed with this disease, which you now know is two to three times more common in women than men?
This is a big deal. After all, MS is going to influence and alter everything you had envisioned for the rest of your life. Think about it. Sob about it. Get angry about it. Then cry about it some more.
Now...stop. It's time to move forward and live your best life in pure spite of this unwelcomed menace that is MS.
Focus on the Future
You had absolutely no choice in whether you got this disease, but you have every choice in how you will respond. The reality is: You are the same person you were the day before you were diagnosed. Nothing about that is different.
It's going to be easy to reflect on life’s what-ifs and what-might-have-beens if you never had been diagnosed with this disease. But MS is here now, and it has changed everything—from what you eat and how you exercise to how you deal with common colds and get through broken relationships—as it continues to attack your central nervous system. How will you respond? Are you going to sit back and let it run up the score against you, or are you going to change your life’s game plan and mount your own offensive and defensive attacks against it?
Game on, I say. Game on.
Respect the power MS has, but believe in your power more. Be aggressive in taking action against this opponent. Start by:
Seeking credible answers to your questions.
Meeting with your neurologist to discuss treatment options and disease-modifying therapies.
Talking to other people with MS who are facing the same challenges as you.
Focusing on things you can control about your health, including diet, exercise, and sleep.
Don't Let MS Define Who You Are
You have MS, but don’t make "you" all about "MS." Don’t let it define who you are. Rather, push to redefine what MS can be.
Maybe you'll be the person with MS who takes up running and actually performs well in local 5K races or continues at the same job you just started before you were diagnosed and gets promoted three times. (You will!) Or perhaps you’ll be the person with MS who earns a graduate degree and writes a book with your wife who also is living with the same disease. (You'll do this too!)
None of these were part of your life's plan before you were diagnosed. But the reality is, did you truly have anything planned for your life beyond thriving in your career, living as a family man, and saving for a comfortable retirement? MS may have changed your story, but you still can change the narrative.
Your new normals are just that: new normals. Some things, like walking, sitting outside in the heat, and staying out late potentially will be more difficult for you. And such changes may be difficult for some of your family members and friends to accept. The key is to be open and honest to educate them about the disease and how it's affecting you.
The reality is that maybe MS won't have a major impact on your life, but maybe it will. How you feel and how much you will accomplish may become game-day decisions.
Set Your Personal Best Each Day
The National MS Society estimates there are nearly 1 million people in the United States who have MS. You are one of those people. You truly are one in a million. Own it.
MS affects everyone differently, so do the best that you can and live your best life. It's a lot like running a race. Most of us aren't going to win first place overall. Some of us won't even compete for the top 20. Just as with running there are factors like the wind and weather conditions that will impact your performance, give yourself the latitude that not all days are going to present perfect conditions. That's why when it comes to running, it's all about focusing on you and pushing for your personal best in each race you run.
And thank goodness you didn't give up on yourself these past 20 years. You’ve accomplished more than you ever imagined possible. You met and married the true love of your life. You became a passionate MS activist with your wife and together, with her, you were inducted into the National MS Society Volunteer Hall of Fame for advocacy. You’ve even served as a keynote speaker at many MS events nationwide.
All these accomplishments and more, despite this disease. Take that, MS.