9 Things You Can Stop Worrying About With MS
The psychological aspect of losing control of your life with multiple sclerosis can be just as traumatic as the physical symptoms themselves. The thing is, some of that emotional toll is brought on by misinformation. There are plenty of MS myths out there that can lead to negative thoughts and worrying about things you can’t control. We talked to the experts about the things patients of MS can put in their rearview to get firmly back in the driver’s seat when it comes to taking charge of their disease.
If I have MS, I might require a wheelchair.
Truth is… “Most people with MS will not become dependent on a wheelchair for mobility,” says Julie Fiol, R.N., director of MS Information for the National MS Society. In fact, two-thirds of people living with MS remain able to walk. Fiol notes that advances in disease-modifying therapies that slow the progression of the disease have really helped people with MS.
But if you do wind up needing a wheelchair for mobility, that’s okay. Wheelchairs are one of the many tools that help some folks with MS continue to do the things they love to do.
Whether you use a wheelchair or not, it’s important to “keep up an active lifestyle to maintain muscular strength and balance,” says Kristen Gasnick, D.P.T., from the MS Center at Holy Name Medical Center in Teaneck, New Jersey.
I’ll have a lot of pregnancy problems if I have MS.
Truth is… For most women, MS itself will not be affected by pregnancy or breastfeeding. “Several large studies have demonstrated that pregnancy, labor, delivery, and the incidence of complications are no different for women with MS compared to women who do not have MS,” says Fiol. A review of pregnancy and MS studies from 2019 also found breastfeeding may help protect against postpartum relapses. While these studies don’t show that breastfeeding will completely prevent relapses post-delivery, it's still one way that pregnancy (and breastfeeding) can help, not hurt, women with MS.
If I have MS, my kids will have MS.
Truth is… “The average person in the United States has about one in 750 (.1%) chance of developing MS. For children who have a parent with MS, the risk rises to approximately 2.5% to 5%,” says Fiol. “If genes were solely responsible for determining who gets MS, an identical twin of someone with MS would have a 100% chance of developing the disease, but they only have a 25% chance.” The fact that the risk among identical twins is only one in four demonstrates that other factors, including geography or an environmental trigger, are likely involved.
I should not exercise with MS.
Truth is… “Exercise safe for all people with MS and healthcare providers should be promoting the benefits to their patients according to a group of clinical and research experts convened by the National MS Society,” says Fiol. Along with imporvingroving your general health, exercise can help you manage other issues like fatigue that can make MS worse.
"MS is a degenerative condition that can worsen over time, especially with inactivity,” says Gasnick. “It is crucial that patients stay active and attend physical therapy, an exercise class, or home exercise program (yoga!) to maintain functional strength to support everyday movements like getting up from a chair, standing, walking, and going up and down stairs.”
Stress is dangerous for people with MS.
Truth is… Dangerous might be an overstatement. Stress is not ideal for anyone, with or without MS. However, “the diagnosis of MS can sometimes make the stress of daily life feel overwhelming,” says Fiol. She notes that many people with MS say they experience more and/or worse symptoms during stressful times; when the anxiety abates, their symptoms seem less troubling or less severe. Learning to eliminate unnecessary stressors—and managing the ones that are here to stay—is essential for staying on an even keel emotionally. And this is true for all people.
Working is impossible if you have MS.
“As a result of MS, I started five companies to help people with MS,” says Gilbert. “You do have to adjust your work schedule to account for symptoms and energy levels, but it is all possible. It is just a readjustment period of a new reality.”
MS does not mean the end of productivity. You should work...if you want to, says Fiol. Many people leave the workforce when they are first diagnosed or experience a major relapse. “It takes time to discover how symptoms can be managed, and whether they will affect your job,” says Fiol. “Review your situation, get educated about your rights and possible accommodations, and connect to available resources to help with your career.” In these COVID times, working-from-home is more common than ever, so it’s the perfect time to talk with your boss about a two-day-a-week type of arrangement going forward.
I won’t live long with MS.
Truth is… The life expectancy for someone with MS has increased over time, says Fiol. It’s about seven years shorter than those who don’t have the condition—which means it’s still a good, long life. Optimizing your health, in spite of MS, can make a big difference. “Research has shown that people with MS who also have other medical conditions like diabetes, heart, and lung disease, were more likely to die younger, compared to people with MS alone,” says Fiol.
The focus should be on how well you live with the condition, says Fiona Gilbert of Menlo Park, CA, a clinician who was diagnosed with MS herself in 2002. “You just need to find the protocols that work for you, for your budget, and for your lifestyle.”
I have to adhere to a very strict diet.
A well-balanced diet is ideal for everyone, not just people with chronic health conditions. And while there is no “MS diet” or (thank goodness) a strict list of foods you can and can’t eat, people with MS should adhere to the same low-fat, high-fiber diet that the American Heart Association and the American Cancer Society recommend for the general population (the USDA's MyPlate). This will help ensure that people with MS keep their energy levels up, as well as keep the bladder and bowel function normal. In addition, research shows that people with MS who eat a diet rich in fruits, vegetables, and healthy fats (from fish and avocado) enjoy a better quality of mental and physical health.
Depression is imminent.
The National Institute of Mental Health notes that depression is one of the most common mental health disorders… for anyone. For those with MS who are worried about a relapse, depression may be a possibility, but there are ways to deal with stress. The National Multiple Sclerosis Society suggests various coping strategies to keep your mental health at its best. These include daily exercise, breathing and mediation techniques, maintaining your social network, and keeping in touch with your medical team. Being mindful and acknowledging when you’re feeling stressed or depressed is the first step to handling it.
Breastfeeding and Post-partum MS Relapse: Journal of the American Medical Association Neurology. (2020). “Association Between Breastfeeding and Postpartum Multiple Sclerosis Relapses: A Systematic Review and Meta-analysis.” pubmed.ncbi.nlm.nih.gov/31816024/