My life changed forever in 2017 when I was diagnosed with multiple sclerosis (MS), a chronic and unpredictable autoimmune condition that affects the central nervous system. The journey has been rocky – OK, really hard sometimes. But I’ve learned a lot and have come to terms with my new normal. I share the following for anyone newly diagnosed. I’m still loving life, and you can, too.
No. 1: It’s OK to grieve
Here’s where I admittedly get stuck sometimes. It’s a whole new world of doctors’ offices, labs, imaging/MRIs, insurance denials and appeals, medications I can barely pronounce, patient navigators from pharmaceutical companies and an infinite supply of confusion. You’ll find your way. Don’t worry. Take someone with you to appointments, if you can. Every so often, I find myself dwelling on my fears about the future and thinking about what I thought my life would be by now. It’s perfectly normal to feel this way, but you can’t stay down. There are more resources and treatment options today than ever before. Be encouraged.
No. 2: Don’t expect your journey to be the same as anyone else’s
I remember hearing stories of people who take a pill a day and are symptom-free. My initial course was tough – two failed disease-modifying therapies and two relapses. I tried one medication that made me feel crappy after infusion treatments at the hospital but others have reported a feeling of euphoria. Our symptoms will vary, too. I’ve experienced excruciating nerve and joint pain, numbness and tingling like pins and needles in my extremities, a jerking sensation from muscle spasms, nauseating migraines, clumsiness and word-finding difficulty with “cog fog.” And, oh, the fatigue. Fatigue isn’t being tired or even exhausted. Fatigue is much worse. You’ll learn your triggers along the way (like stress, infection and heat) and how to avoid them. You’re much stronger than you may think.
No. 3: Make sure your care team is solid
Ideally, you’ll want to find a neurologist who specializes in MS – with whom you can be open and honest. A primary care provider quarterbacks your care and others will have a role, too, such as radiologists, specialty pharmacists, speech therapists, ophthalmologists, lots of amazing nurses and more. I’ll never forget the day I was diagnosed. My mom was upset and my neurologist, Dr. Matthew Carraro, hugged her and assured my parents that they’d take good care of me. We collaborate when it’s time to choose a disease-modifying drug and discuss whether the benefit outweighs the risk. Be honest about whether aggressive therapies are something you do or do not want to try.
No. 4: Trust your gut, literally
No one knows your body like you do. Diet has a huge impact for me. I try to consume anti-inflammatory foods, though I struggle to stay on track sometimes. You can’t always control what happens within, but you can control some aspects of living with this condition. Aside, if you’re at the office or in public somewhere, and you sense that someone near you is sick, run and hide. A cold or the flu hits differently when you have multiple sclerosis. I’ve joked with other MS-ers about how getting sick while taking an immunosuppressant feels a lot more like you’ve got the plague. You are your greatest advocate.
No. 5: Be patient with yourself and lean on others when needed
I’ve always considered myself to be pretty independent. Now, I’m leveraging my support system. It took a while to figure that out. My family frequently checks in and keeps me uplifted. I’m always amazed how my boyfriend is so open and willing to try healthy dishes that don’t exactly sound appetizing. On my worst fatigue days, he’s carried me up stairs and held me while I winced in pain. My dad and “forever friends" will occasionally send me text reminders to keep going and stay strong. Another friend from college is a personal trainer, and given that exercise is essential, she keeps me moving. There’s a host of loved ones, colleagues and supporters standing side-by-side with me. They’ve all got my back. I pray that you never feel alone.
No. 6: Do you!
I try to protect my peace and balance, and we must all be intentional about managing stress. Consider alternative methods for coping with the condition and research supplements like magnesium, omega-3s and vitamin D. (First, consult with your care team!) I can relate with what’s called the “spoon theory” for energy consumption. We begin each day with a certain number of spoons to fulfill tasks. Once they’re gone, they’re gone, leaving us physically and mentally drained. I force myself to take breaks during the day to keep my energy balanced. Sometimes, you may need to change or cancel your plans because you don’t feel well. It’s OK.
One of the hardest things is managing your own expectations. I’m not going to sugarcoat the situation. Living with MS can really suck. Every day, we wake up not knowing whether our bodies will attack us in new ways. But I think it’s all about perspective. I want you to know there’s hope for tomorrow – and we owe it to ourselves to prosper today. Be well.
Tenisha Waldo is a corporate communications manager at Novant Health who lives in Charlotte, North Carolina.
Top photo: Waldo at her first infusion treatment at Novant Health Presbyterian Medical Center in Charlotte.