Because multiple sclerosis involves nerve damage that can occur throughout the body, including brain connections, symptoms can vary widely and be progressive. That makes each patient’s journey unique, and can prompt challenges on both sides of the exam table.
Here’s what eight patients with the disease wish doctors knew when it comes to helping them manage the condition more effectively.
Diagnosis should be its own appointment
Although Dr. Claire Warren—a 70-year-old Stonington, N.Y.–based physician—has plenty of experience treating patients with all kinds of ailments, it wasn’t until she was diagnosed with MS that she truly understood what it felt like to be diagnosed with a chronic condition. MS is a disease of the brain and spinal cord that can cause symptoms such as vision changes, balance problems, and weakness.
“Honestly, I was a hot mess,” she says. “By the time I went, I had numerous symptoms, but I was in denial about the fatigue, numbness, and increasing mobility concerns. Then, even when I had an answer about what was going on, I refused to accept the devastation of it.”
After her doctor said, “You have MS,” Warren realized, she didn’t hear anything that followed. That’s true as well for Johnnah Rosano, a 39-year-old Boston resident who says it felt as if her brain shut off as soon as that diagnosis was made. Because this is a life-changing condition, being able to adjust to the news takes time—and it would be beneficial to have one appointment that’s simply about getting the diagnosis and doesn’t also include all the possible treatment options, Warren suggests.
“I think it’s helpful for doctors to know that this is devastating,” she says. “This disease will affect your whole life, and that means you have to adjust mentally, which takes time.”
Read More: ‘I Burned All the Time.’ Selma Blair Discusses Her MS Diagnosis and Hope for Effective Treatments for Chronic Diseases
Take time to explain tests and imaging
With MS, there are so many tests that it can be dizzying to understand the purpose of each one, much less what those tests are supposed to convey, says Vickie Hadge, a 56-year-old Connecticut resident.
Although patients may have access to results in their patient portals, it can be confusing to navigate through terms like white matter hyperintensities and to understand why 10 vials of blood are needed.
“Even if you had a printout of what each test is supposed to show, that would help, because this disease often feels overwhelming,” Hadge says. “Clarity and understanding can reduce that feeling, and that’s a big advantage.”
Another aspect of care that would be useful, she adds, is simply conveying what different evaluations include and what to expect. For example, a functional evaluation often takes about three hours, and Hadge went into her first one with no idea why she was going, what would happen during the appointment, and how the results might affect her treatment. That lack of preparation can cause stress and anxiety, she says, potentially worsening MS symptoms and leaving patients feeling helpless.
Grief counseling is a helpful addition to treatment
Mental health is a major component of dealing with MS, and while seeing a therapist is often helpful, focusing on grief specifically makes a strong starting point, believes Brittany Quiroz, 33, who lives in Corona, Calif.
After all, MS diagnosis and progression can involve feeling loss, in terms of both physical function and potential future plans, as well as cognitive challenges. Being able to find peace within the condition would be hugely valuable for disease management, Quiroz suggests.
“Managing illness like this is a full-time job, and having emotional support should be part of treatment,” she says. “If doctors could have those resources available in advance, so they could share them immediately, that would go a long way toward dealing with the stress of having MS.”
Understanding our frustrations helps us feel heard
Much like a condition like lupus, MS can take years to diagnose after symptoms begin, and those symptoms can change over time—sometimes even from month to month. That’s already stressful, but if you feel unheard at a doctor’s appointment, it’s so much worse, says Sonda Rossman, a 51-year-old Detroit resident.
“There are many symptoms that are invisible, like cognitive impairment, fatigue, and sensory issues,” she says. “These don’t show up on lab or imaging tests, so I believe doctors need to rely a little less on what the results say and a little more on what patients are saying. Don’t tell me I’m OK because that’s what the MRI says. I know my body, and I know when it’s not OK.”
Another frustration may be a lack of coordination among specialists, adds Rosano. For instance, she began experiencing high blood pressure, and her neurologist suggested anxiety medication because “people with MS don’t have high blood pressure.” But she didn’t feel anxious, so she asked to see a cardiologist. He told her it’s common to see blood-pressure issues in those with MS, and prescribed medication that addressed the problem.
“This is just one example of how we often have to talk to one doctor after another, because for many of us, there’s no point person looking at the whole picture,” Rosano says. “So on top of being sick with a disease that usually includes fatigue, we have to be our own health advocates. It’s exhausting, and it can lead people to be reluctant to talk about their symptoms, which is obviously not ideal.”
We want to discuss nutrition and other lifestyle changes
Nutrition is notoriously understudied in medical schools, says Warren, who had to educate herself on the topic, both before her MS diagnosis and afterward. Her sister, who’s an ER physician, began eating a plant-based diet as a way to reduce dementia risk and encouraged Warren to give it a try for her MS symptoms. She’s been eating that way for seven years now, and she’s seen significant improvements in her “brain fog” and energy levels.
“Even though MS involves inflammation and is an autoimmune disease, not once did a doctor talk to me about what I was eating and whether that might be making symptoms worse,” she says. “There’s a connection between your gut health and your immune system, so it makes sense that improving your diet might help your MS. But I know it’s challenging, because doctors don’t get paid to talk to people about nutrition; it’s not considered a priority. But it really should be.”
Patients are eager to hear about the effects of other lifestyle changes as well, adds Jenna Green, 37, who lives in Mansfield, Mass. That includes sleep habits, exercise, stress management, and complementary therapies like mindfulness, acupuncture, and massage. In general, conversations like these acknowledge that MS affects every aspect of a patient’s life, Green says.
“To live your best life with MS is to factor in everything from what you’re eating to how you’re moving to how you’re managing stress,” she says. “Even small changes can make a huge difference for us, so we want to talk about that. Help us put together a health team that includes not just specialists but also professionals like therapists and dietitians.”
Another major lifestyle habit that’s essential is connecting regularly with others who have MS, says Green. Doctors who do a little research up front on what those communities might be and how patients can tap in to them would be offering a valuable service, especially for those who are newly diagnosed and feel adrift, she adds.
“This can be a very disempowering diagnosis,” Green says. “Connecting with others and having strategies that help us feel more in control of our health can give us back part of what we’ve lost when it comes to confidence in making our own health care decisions.”
Many of us are incredibly well informed about our condition
What Rossman has found in the nearly three decades since she was first diagnosed is that the MS population tends to stay current on research, and connects often with one another about symptom management, potential therapies, and clinical trials.
“What many people do when they first get diagnosed these days is get online, and we are a very active community of patients—we’re eager to share insights and information,” she says. That means doctors and other health care professionals should consider patients as part of the disease-management team, she says. For example, talking about possible research directions in a field like personalized medicine doesn’t give a false sense of hope; it loops patients into discussions that they want to have.
“We want to feel included in what’s happening with MS on a larger scale, not just with our treatment specifically,” says Rossman. “I think doctors sometimes underestimate the power of a patient community and how that drives advocacy and action for us.”
Read More: The Disempowering Experience of Flying as a Disabled Person
We want you to understand the nuances of treating Black patients
According to the National Multiple Sclerosis Society, more Black people have MS than previously believed, and they may have different symptoms than people of other races. They also tend to have more aggressive disease progression, greater disability, more difficulty with mobility and coordination, more frequent relapses, more cognitive and visual symptoms, and earlier onset of disability.
Despite all that, some physicians may still think MS doesn’t affect Black people, especially Black women, as much as it does, says 38-year-old Atlanta resident Azure Antoinette. Her mother, sister, and father have MS, yet it took her five years and increasingly serious symptoms to be diagnosed, she says.
“Health equity for African Americans in this country is a massive problem, and that can come down to what’s happening to individuals like me,” she adds. “You can’t imagine how invisible you can feel when no one is listening to you, and it’s heartbreaking. What I want is for doctors to hear me, regardless of how I look.”
Another important point for doctors to consider is that many Black patients may have a mistrust of the health care system and medical professionals, says Ashley Ratcliff, 37, who lives in Long Beach, Calif. She says that given the history of what’s taken place in the U.S.—such as the Tuskegee experiment and ongoing disparities in maternal mortality among Black women—it may take time and patience to earn patient trust.
“Please treat us kindly, and be transparent about our prognosis and all options available in our treatment,” Ratcliff says. “Get to know us. We are real people dealing with the trauma of being diagnosed with an incurable illness.”
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