Your neurologist confirmed that the white spots peppering your MRI scans are a progressive disease of the central nervous system.
This is what has triggered the mysterious symptoms you’re experiencing. Things like numbness. Fatigue. Bladder issues. Cog fog. Pretty much everything else that has no logical explanation.
“You have multiple sclerosis.”
Hoping for better news, you maybe even sought out a second opinion only to learn that yes, it indeed is MS.
Gulp.
This four-word phrase — “You have multiple sclerosis” — is life changing. It has the power to, directly and indirectly, affect your daily life no matter how long ago you first heard it.
After a diagnosis of MS, most of us are initially immersed in a sea of fear and denial. We battle to get ourselves through the waves and safely onto the solid ground of acceptance. How are you doing with that?
Truth be told: Both of us writing this have lived with MS for over 20 years, and still haven’t made our way to this seemingly elusive solid ground of acceptance. Oh, we’ve made it safely to shore, but we’ve found that the ground is shaky at best.
And you know what? That’s totally fine! When you’re living with a progressive illness like MS, acceptance doesn’t happen overnight, because the disease is perpetually evolving. You need to learn to evolve with it.
That’s why it’s important for you to understand what accepting life with MS looks like, why this acceptance is a work in progress, and how you can empower yourself to make MS a disease you can accept.
Neither of us wanted to readily acknowledge the reality of our diagnoses — Jennifer with secondary progressive MS and Dan with relapsing-remitting MS. Seriously, does anybody actually welcome the diagnosis of a progressive disease for which there is no cure with open arms?
We both were in our 20s and pretty much had our entire adult lives ahead of us. Fears gave way to tears, denial, anger, and every other standard stage of grief.
MS is serious stuff, and it isn’t going anywhere anytime soon. So what is someone with MS to do?
We both realized that ignoring the disease wasn’t going to do either of us any good. And, because neither of us are into gambling, we weren’t willing to take any chances that we’d be OK if we paid it no attention.
It’d be as if people who live along Miami Beach did nothing to secure their homes when forecasters report that a hurricane slammed the Bahamas and is headed straight toward Florida. The storm could miss them, but do they really want to tempt fate?
In initially accepting that we had MS, we could move forward with doing our research, becoming informed, making personal connections, taking disease-modifying therapies, managing our diet, preparing for the worst, and celebrating our successes.
Make no mistake: This “acceptance” didn’t equate to “surrendering.” In fact, it meant we were taking action to get out ahead of the disease on our own terms.
But our work to accept life with MS didn’t end following the first shock wave set off by our formal diagnoses. It continues to this day.
Several times throughout our relationship, I’ve shared with Jennifer a conversation I had with my priest when I contemplated becoming Catholic. In saying that I still had some questions about Catholicism, he told me what he once said to a 28-year-old lifetime Catholic who was questioning her beliefs.
“She explained, ‘Father, I just feel like I’m losing the faith I’ve had all my life.’ I told her, ‘Good! That’s exactly how it should be! Think of it: Would you have what you need at 28 if you maintained the same faith you had as a 10-year-old? It’s not so much a question of losing your faith. It’s more about how your lifetime of experiences and understanding are helping you grow deeper in the faith you once had.’”
Wow. Excellent point, Father. This perspective and approach reaches far beyond religious consultations. It’s gets to the very core of why acceptance of MS is a work in progress.
Yes, Jennifer and I both accepted the fact that we had MS and were on board to do what we had to do following our diagnoses 23 and 21 years ago, respectively. If only the disease had stopped there.
For more than 2 decades, we’ve each had to make adjustments and learn to accept new MS-related realities, like when Jennifer could no longer walk and needed to use a wheelchair, or when my hands were so numb that I had to use voice recognition software to help with typing for my profession as a creative writer.
Could we have been as accepting to these realities when we were first diagnosed? Probably not.
That’s why our acceptance of the disease is a work in progress. MS never stops, and neither should we.
There’s a lot about MS that we can’t control. It’s unpredictable, remember? We could throw the “When life hands you lemons, make lemonade” cliché at you, but that is a little too light for what is needed to boldly move forward in the face of MS.
We’re not making lemonade. We are point-blank refusing to give in to this disease.
I told Dan that I didn’t think it was a big deal when I started using a three-wheeled scooter about 5 years after my diagnosis. Aggressive disease progression was taking away my ability to walk and I was falling down… a lot. But I was only 28 years old, and I didn’t want to miss out on anything. I needed the scooter to safely move around and live my life to the fullest.
Sure, I could have checked out because I could no longer walk, but the wheels kept me in the game at that moment. And now, if I have to rely on a wheelchair, I’m going to be the best. Look the best. Own it. Realize and appreciate all that this mobility aid is giving me.
I have accepted that I can’t walk right now, so I use a wheelchair. But what empowers me is knowing that I will not accept that I’ll never walk again. This gives me hope and helps me to continue to work and strive for an even better future.
It’s through empowering ourselves that we take the agency to accept where we are with our MS while not losing ourselves to the disease. That’s why acceptance of MS is a work in progress. Just as you’re not the same person as you were at diagnosis, your MS is constantly changing, too.
Dan and Jennifer Digmann are active in the MS community as public speakers, writers, and advocates. They contribute regularly to theiraward-winning blog, and are authors of “Despite MS, to Spite MS,” a collection of personal stories about their life together with multiple sclerosis. You can also follow them onFacebook,Twitter, andInstagram.