Can you live a normal life with MS

I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life.

I’ve learned a lot since then, not only about myself and MS, but also about the human condition and how to face both triumph and sorrow. I thought I’d share a portion of what I learned while living with MS for 31 years.

1. Listen to your body. Your body is a brilliant machine that does its best to stay healthy. But when something goes wrong it does its best to let you know.

2. Trust your intuition. If you feel something has gone awry it probably has.

3. Communicate your thoughts and feelings. It’s not always easy, but communication is a healthy option. Don’t keep your thoughts and feelings to yourself. That can lead to physical and emotional harm. Talk things out with others.

4. Educate others. There’s no time like the present to teach people what MS is and isn’t.

5. Doctors. Look for a doctor you feel comfortable with. They won’t always be the one who comes highly recommended. A good doctor should listen to your needs, is aware of recent research, and looks not only at your MS, but at the WHOLE person — physically, emotionally, and spiritually.

6. Family. Having an understanding family makes living with MS easier. Unfortunately, not everyone’s family is compassionate. Use your voice to express your needs. If they don’t understand, then educate them. Give them pamphlets, direct them to websites, have a frank but gentle discussion with them, or schedule time with a family counselor. It’s important to have family members who understand your journey. You deserve that.

7. Friendships. Not everyone will understand your illness. Some can’t handle it. For whatever reason, if friends fade away it may sting for a while, but in the end, you’re better off being surrounded by people who truly care about you.

8. Celebrate good days. When you’re feeling strong take advantage by celebrating life. Enjoy yourself when you’re feeling well.

9. Make yourself as comfortable as possible on bad days. If you have a bad day (or days), do whatever it takes to make yourself comfortable. Be mindful that you have choices, both traditional and holistic, and that only you are the owner of your body. No one can or should tell you what’s right for you.

10. Find beauty. There’s so much beauty in the world. Reach for it to enjoy. Watch the sunset, play with your pet, absorb moving paintings by the masters, read an engrossing book, find solace in poetry, or listen to soothing music. Beauty surrounds us. Turn to it on both good and bad days.

11. Contemplation. Religion is one thing. If you’re a religious person, I’m sure you find great comfort in it. But I am more of a spiritual person. I find great comfort by reading or listening to the words of Pema Chödrön, Jon Kabat-Zinn, the Dalai Lama, Paulo Coelho, don Miguel Ruiz, Thích Nhất Hạnh, and many others.

12. Treat yourself. When I’m having a good day I treat myself. The treats are not anything extravagant. It can be a manicure, walking in a beautiful park, visiting a dear friend, eating a delicious chocolate chip cookie, or taking a gentle yoga class. Treating myself lifts my spirits.

13. Pets. I was in my 40s when I had my first pet. Now I’ll never be without one. We’ve adopted four cats so far and each one has provided unconditional love, standing by my side on my darkest days and brightening my good ones. Animals have a sixth sense about illness. They are always our best friends and constant companions. I feel truly blessed to call myself a pet owner. As they say, who rescued who?

14. Chores. I used to be type A about getting chores done, and they had to be done perfectly. I had a lot of energy in those days. As I aged and my MS fatigue increased, I realized it was impossible to complete my chores the same way. Now, I prioritize what I absolutely must get done, versus what can be put off until tomorrow. I have to save my energy, so prioritizing is a must.

15. Guilt. I used to feel guilty about everything. Not about having MS, but about its consequences. The need to cancel plans, being unable to keep up physically with others or the need to nap. Feeling guilty is a waste of time because you can’t change anything with guilt or worry. Remember this: At one time or another, everyone will have a reason to slow down. It may not happen as early as it has for us, but it will happen. So, stop feeling guilty about what you can’t do. Be proud of who you are. You’re doing the best you can.

16. Comfort: For women, I get it about wearing high heels. They make you feel taller and leaner and they’re more fashionable. But when you have issues with balance, numbness, or weakness, high heels are not for you. It took me a while to give them up. Now I’m an Aerosoles/Naturalizer/Easy Spirit kind of girl. I want the soles of my shoes to be flexible and grippers for the winter so I don’t fall on snow or ice. I’m never going to walk a fashion runway, but the shoes I buy help me feel in control of my walking, and that’s more valuable than crowded shelves of Prada.

17. Research. Read as much credible information about MS as you can. Keep up with the latest research, medications, clinical trials, patient websites, assistive technology, advocacy, or any other focus you are interested in. Sign up for updates and newsletters. Be vigilant about staying aware.

18. Blogs. There are many MS-related blogs that offer news and opinions. If you find one you like subscribe to it. Aside from my own blog, AnEmpoweredSpirit.com, I also enjoy Dan and Jennifer Digmann, a husband and wife both living with MS, My New Normal, Girl with MS, Brass and Ivory, BBHwithMS, Shift.ms, Ashley’s Life with Multiple Sclerosis, and The Lesion Journals.

19. A vision of yourself. See the beauty within yourself. Having a disability doesn’t take that away. You shine from within. Never forget that.

20. Focus. Your main focus should always be to stay as healthy as possible. No matter what else is going on in your life, this must be your priority. Practice yoga, do stretches at home, move around, breathe in fresh air, meditate, try tai chi. If you don’t make yourself a priority, do it now.

21. Relax. Learn to meditate, do breathing work, take a nap, lie on the grass, sit in a hammock, watch a movie, read a book, listen to music, be still. Use this time to clear your mind and become absorbed in the moment.

22. Doctor visits. Schedule regular doctor appointments. Use a calendar for reminders. Knowledge is power when it comes to knowing what is happening to your body. Don’t skip appointments unless you absolutely must.

23. Curiosity. I enjoy learning new things. It stretches the mind and keeps your cognition intact. Learn a new language. Sign up for courses in writing or knitting. Explore different cultures. Read books on history or philosophy. The list is endless and it’s always time well spent.

24. Spirituality. I am a very spiritual person and enjoy reading spiritual books and quotes. I lean on these teachings more often as I age. From Pema Chödrön to the Dalai Lama, what I learn provides me with inner peace. Sometimes when I walk outdoors I listen to them on YouTube. I find it both satisfying and relaxing.

25. Food. I use food as medicine. Over the past year, I’ve received four digestive-related diagnoses. Doctors prescribed medications while my friends advised avoiding gluten, sugar, and dairy. Now I’m on a new food journey that has eliminated my stomach pain. What we choose to eat affects our health.

26. Toxicity. In order to survive and thrive in life, it’s important to remove toxic behavior. Toxic relationships don’t have your best interests at heart. If someone is placing an emotional burden on you, it’s time to let go. It’s not always easy, but it’s worth it.

27. Therapy. There is no shame in seeking professional help. Talk therapy, and if necessary prescription medications, can help ease your inner pain. Look for a qualified therapist whose style and goals are in sync with your own.

28. Joy. No matter what MS throws your way, be sure to let joy into your life. It’s important to find joy and allow it in. Whatever makes you happy and feeling joyful is what’s right for you.

29. Worldview. The universe is big and the problem of one person is a tiny part of it. Remember there are other people in the world struggling with problems. Take time to listen to them with an open heart. Be compassionate about their problems. We don’t have the corner on suffering. Helping someone else is a gift you give to someone else and also to yourself.

30. Sneakers. These are my shoes of choice. Working from home I no longer need to get dressed up. Now it’s New Balance, Skechers, or bust! They give me comfort, flexibility, and I feel more stable and balanced in them. I wear sneakers so frequently I now own three pairs.

31. Honesty. I wasn’t always honest with myself about what I needed. I’d go along with the crowd because I didn’t want to upset others once they learned of my needs, or I pushed myself out of a desire to do everything I always did before my diagnosis. Now, I am honest with myself. Can I keep up? Should I stay out later? Should I schedule two appointments in one day? Being honest with yourself will help you stay healthier and happier. Let the chips fall where they may about others handling your illness. You need to think of yourself first. This may sound selfish, but in the end, it’s healthiest for you.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats. × Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats.

What Jamie-Lynn Sigler’s MS Diagnosis Means – and How Other Stars with the Disease Have Coped

Decades ago, a diagnosis of multiple sclerosis – an autoimmune disease for which there is no cure – could have been viewed as a death sentence. But today, it’s entirely possible to live a normal, full life with the disease.

As Jack Osbourne, who found out he had MS in 2012, told CBS of receiving his diagnosis: “I had heard really pretty tragic stories, so I thought, “Oh my number’s up. This is it.’

“Once the panic subsided, I reached out to people and got put in contact with some people who had been living with MS for a while and started learning about different treatments and learned it’s s—-y, but it’s not the end of the world.”

With Jamie-Lynn Sigler revealing to PEOPLE this week that she’s been living with the disease for 15 years, here, a few celeb-curated words of encouragement from other stars who’ve faced MS – and continued to live happy, full lives:

1. Attack it head-on
Ann Romney, wife of 2012 Republican presidential nominee Mitt Romney, has been living with MS since 1997 and first went the conventional route in her treatments – something she recommends to others living with MS. “It’s very important that people get aggressive in early treatment,” she’s said. The National MS Society also recommends comprehensive care for those living with the disease.

2. For some, medicine isn’t the only thing that can help
While medical treatments can go a long way toward improving the conditions of those living with MS, Romney says that they aren’t the only solution. She turned to alternative methods – like reflexology and horseback riding – to help her cope. As she told PBS: “Losing yourself in doing something else, and not always dwelling on your illness, is very important.” The National MS Society promotes the use of alternative medicines, too, but stresses that they should be used in addition to, not instead of, conventional treatments.

3. Know your limitations
When Sigler was first diagnosed, she found it difficult to understand since she didn’t feel sick. Fifteen years later, she says that while her life is relatively normal, she’s no longer symptom-free. “I can’t walk for a long period of time without resting. I cannot run,” she told PEOPLE. “No superhero roles for me.”

4. But don’t let them define you
After Osbourne’s initial diagnosis, he realized he could live much as he had in the past, despite what many think about the disease. “I think it’s that probably people assume once you’re diagnosed, you’re no longer an able-bodied individual,” he told CBS. “I do everything from extreme physical activities to day-to-day things. There’s nothing I can’t do, and I think people assume because I have MS I’m no longer capable.”

5. Like everyone else, watch your diet and remember to exercise
Talk show host Montel Williams, who was diagnosed with MS in 1999, sticks to a fruit- and veggie-heavy diet chock-full of smoothies (for anti-inflammatory purposes). The National MS Society recommends a low-fat, high-fiber diet, too. Additionally, Williams works out daily to help curb the movement-induced pain Sigler mentioned. “It doesn’t matter whether my time is 20 minutes or an hour,” he said. “I m moving, which means I walk better for the rest of the day.”

To learn more about MS, visit The National MS Society.

10 Tips for People Newly Diagnosed With Multiple Sclerosis

8. Consider complementary and alternative medicine. In addition to taking medication to control your MS symptoms, you may want to consider complementary treatments, such as biofeedback, acupuncture, guided imagery, meditation, massage, tai chi, yoga, and dietary supplements. The majority of people with MS turn to these and other forms of complementary medicine to relieve symptoms, according to the NMSS. Such natural therapies are often used for pain relief, fatigue, and stress.

9. Think about whom you’ll tell. Announcing to your employer that you have MS could negatively affect your job security, employment options, and career path. Before disclosing the disease at your workplace, learn about your rights under the Americans with Disabilities Act.

Of course, you’ll want to tell your closest family members and friends, particularly those who know you well enough to notice that something is wrong. But you are not obligated to share news of your MS diagnosis with everyone in your life. Instead, pick the people who will be most supportive and helpful as you learn to live with the disease.

10. Don’t give up hope. Although there currently is no cure for MS, newer treatments can slow the progression of the disease, improving your quality of life and preventing disability. And research is ongoing, with the goal of developing even better treatments in the near future that will stop progression and even restore functions and abilities that have been lost.

Multiple Sclerosis Society of Canada

Coping With The Diagnosis

You or someone close to you has just been newly diagnosed with multiple sclerosis. This unwelcome news can be overwhelming and it is normal to feel a wide range of feelings. There is no one right way to cope with this news and no one will react to the disease in exactly the same way or face exactly the same challenges.

Initially a diagnosis of MS may produce shock, disbelief, anger, fear, and denial – all of which are normal, predictable reactions to this kind of difficult news. Denial can be a very useful and effective coping strategy during the early days of a chronic illness – allowing a person to take a brief “time out” before beginning to deal with the realities of MS. However, denial that goes on for weeks or months can also get in the way of important treatment decisions and self-care strategies.

Whether you or someone close to you was diagnosed, MS can represent a very real and complex life change. It may be unrealistic to expect that you’ll accept the diagnosis right away, or all of the time. If possible, try to find small ways of adapting to the presence of MS in your life. Being adaptable does not mean giving up your plans, priorities, or goals. It means finding what works for you so that your life is as enjoyable and full as possible, even with the changes that MS may bring.

Each person is going to react in his or her own way to the diagnosis. Remember that there is help available if any of the feelings become unmanageable or too uncomfortable. The MS Society of Canada offers a variety of information and support services.

Dealing with diagnosis

For some people, being diagnosed with MS can be overwhelming, frightening, and distressing. For others it can be a relief, especially if they’ve had symptoms which couldn’t be explained. Others might shut down emotionally.

Often, it’s a combination of all the above.

Getting the diagnosis could raise as many new questions as it answers, and reactions will vary from person to person and over time.

Try to remember:

  • it is different for everyone
  • there is no right or wrong way to react
  • however you do react, it is part of a normal process

MS may mean you have to make changes over time, but you are the same person you have always been.

MS diagnosis – the roller coaster ride

One way of understanding the initial reaction is to look at it like a roller coaster ride.

At first there is fear and anticipation. Once you’re seated there’s the realisation that you can’t turn back. Then the ride then begins and you go through different emotions – there are highs and lows.

Some people are able to cope with the ride and others find it too frightening.

It’s not only the person given the diagnosis who might go through these reactions, but also those around them.

Each family member and close friend may react differently. For example, the person with MS might feel relief, while their partner is in denial. This experience is very common.

> Find out more about telling people you have MS

Living better at home with multiple sclerosis

If you are the one with multiple sclerosis…

  • Maintain good health. It’s important to take care of your primary healthcare needs, as well as MS care to reduce the risk of developing other health conditions (co-morbidities), such as heart disease, stroke, diabetes, or cancer. Maintain a healthy weight and good nutritious diet.
  • Make sure you have a primary care doctor. People with MS often rely on their neurologists for all of their healthcare needs. But you don’t want to neglect your overall health and routine care while managing MS symptoms.
  • Stop smoking. MS risk is increased in smokers. Smoking also can reduce the effectiveness of certain MS treatments and can pose a fire hazard when the smoker has weakness, coordination problems, and cognitive issues. Quitting even after an MS diagnosis is advised.
  • Reduce alcohol and substance use. Alcohol and other substances may interact with medications taken to combat MS symptoms. Although cannabis can help to reduce certain MS symptoms, such as pain and spasticity, smoking marijuana poses some of the same health risks as cigarette smoking. Be careful if you’re using cannabis in other forms, too. It can impair balance, coordination, and cognition. MS progression is not shown to be changed by cannabis use.
  • Ask for help when you need it. There are times when maintaining your independence might mean knowing when to ask for help. For example, if you’re having balance or vision problems, consider adding a home care professional to your team to stay safe at home. When partners are at work and teens are at school, having a professional on call to help out if needed can be a lifesaver.

If you’re caring for someone with MS…

  • Learn about the disease. When someone you love is diagnosed with MS, knowledge is power. Since MS affects different people in different ways, learn the specifics of how it will likely affect your loved one. Being a supportive partner may sometimes mean stepping in and helping with daily activities. At other times, it will mean steering clear so your home is quiet when your loved one needs rest.
  • Have a plan B. MS can be unpredictable. You may need to become a master of the backup plan. If you’re scheduling a beach excursion, build in extra travel time, check on the bathroom facilities ahead of time, and accept that your vision of frolicking in the waves together may be replaced by enjoying a view of the beach from your car.
  • Line up help. One day a person with MS might need help dressing, the next they can do it on their own just fine, then they need again. Consider who your support team includes and how flexible people’s schedules are so you can distribute tasks accordingly when circumstances change. A professional caregiver can help with household tasks including shopping, cooking, laundry, and transportation in addition to personal care like dressing, bathing, exercising, and medication reminders.
  • Plan me time. Don’t replace your identity with full-time caretaker. You too need to stay healthy, continue doing activities you enjoy, keep seeing your friends, and be sure you’re getting enough sleep and good nutrition. Avoid fatigue, isolation, and growing resentment by taking frequent breaks and counting on help from others when you need it.

Multiple sclerosis facts

  • MS is more common in women, appears more frequently in Caucasians than in Hispanics or African Americans, and is relatively rare among Asians and certain other ethnic groups.
  • MS is most commonly diagnosed in individuals between the ages of 20 and 50, although it can develop in young children, teens, and older adults.
  • Women are at least two to three times more likely than men to develop MS.
  • Major symptoms sometimes disappear completely, and the person regains lost function.
  • In severe MS, people have permanent symptoms that might include partial or complete paralysis and difficulties with vision, cognition, speech, and bowel and bladder function.

Helpful resources

  • To learn more about multiple sclerosis or to find resources in your area, visit the National Multiple Sclerosis Society.
  • For tips on caring for someone with MS, check out the National MS Societyʼs Guide for Caregivers.
  • Find information on volunteering for research studies and clinical trials.
  • Explore blogs about multiple sclerosis for info and inspiring ideas.

This information is for educational purposes and is not a substitute for the advice of a medical professional. Source: National Multiple Sclerosis Society

At the intersection of hope and despair is a bench to sit and rest. At least, I hope there is. The bench gives us an opportunity to take a breather from the stresses of the world. It’s a chance to sit and think about which road to choose. As Robert Frost said, the road we choose makes all the difference.

I imagine there’s a third road to travel, one we’d never choose. That’s the road to chronic illness, and there’s no going back. As we walk along that path, our lives suddenly change. Abilities disappear, like walking steadily on our feet, seeing the world with 20/20 vision, or feeling invigorated after a restful sleep.

MS is thrust upon us, and a new journey begins.

Luckily, we have a few superpowers to help us live our best life: maintaining a positive attitude, adapting to a new normal, and finding the courage to move on.

Our superpowers help us learn to accept our chronic disease, which is not a sign of resignation. Acceptance is the ability to make peace with where you are right now.

I know this isn’t easy to do, but it’s certainly worth it.

When you’re sitting on that bench at the crossroads of hope and despair, take a deep breath and remember that with time and practice, you can learn to adjust. Here are a few ways to help you:

Emotions

Lean into your emotions instead of fighting them. Allow yourself to feel grief, denial, sadness, or anxiety. These are all normal reactions when living with chronic illness. They will likely fade with time, but if they don’t, get help from a qualified doctor or therapist.

Coping

Create coping strategies by confronting your diagnosis. According to the American Psychological Association:

“Another study, also of women with breast cancer, found those who sought social support and used active coping strategies — such as developing a plan of action — reported more inner peace and satisfaction with life two years later, compared to women who tended to deny or avoid their diagnosis.”

The article suggests we focus on what we can control in our lives, such as eating healthy foods, taking prescribed medications, and severing toxic relationships.

Support and friendships

It’s important to have supportive friends and family members who help us better manage our disease. Having a dialogue about what MS is, and how you are affected by it, is important. Be honest and open while encouraging others to ask questions and be honest about their feelings. Relationships work both ways, so remember to be as good a listener as you want others to be.

Knowledge

Be an expert on your disease. The more knowledgeable you are about MS, the better you’ll understand it.

Build a team of experts

Doctors don’t have all the answers. Nobody does. Over the years, I’ve relied on many nurses who are a wealth of information. Registered dieticians helped me improve my eating habits. A physical therapist taught me to walk correctly with a numb leg, and an occupational therapist showed me how to write with a numb hand. Having a team of experts in your corner will give you the confidence you need to move on with your life.

I hope to see you on the road to hope …

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats. × Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats.

Finding out that you or a loved one has a chronic medical condition can be incredibly daunting, and multiple sclerosis is no exception. MS is a chronic and usually progressive autoimmune disease that damages the sheaths of the nerve cells in a person’s brain and spinal cord, often making it difficult for them to get around as easily as they used to.

More than 2.3 million people around the world are affected by MS, according to the National Multiple Sclerosis Society, and most people are diagnosed between the ages of 20 and 50, which means that it’s likely you know someone who has been diagnosed with MS.

“The quality of life of an MS patient is driven in large part by social support,” Amit Sachdev, M.D., an assistant professor and director of the Division of Neuromuscular Medicine at Michigan State University, tells SELF. He points to research published in the European Journal of Neurology that found that social support was so important to patients with MS that the researchers recommended that patients be asked about their level of support, among other factors, when they see their doctor.

Farrah J. Mateen, M.D., Ph.D., board-certified neurologist with the Multiple Sclerosis & Neuroimmunology Clinic at Massachusetts General Hospital, agrees that being there for a loved one with MS is one of the most important things you can do to help. “This extends from the time of diagnosis, which can be life changing for some people, to day-to-day support in understanding symptoms, seeking attention for health needs, enhancing quality of life, and meeting the challenges of a chronic disease head-on.”

If someone you love has received an MS diagnosis, here are a few things you can do to help:

1. Understand that there’s a lot of uncertainty with MS.

The disease can be unpredictable and it impacts everyone differently. MS symptoms can range from dizziness, imbalance, weakness, cognitive changes, and vision loss, so it’s important for loved ones to be aware of the variability and fluctuations that can occur with symptoms, Dr. Mateen says.

People also have choices to make when it comes to medication, Dr. Mateen says, and different medications can come with a variety of possible side effects. “Make no assumptions that what you read about other people with MS will be the situation for your own loved one,” she says. “MS is a very heterogeneous and unpredictable disease.”

2. Treat them the same as you always have.

“In general, the best approach is to treat any person with a neurologic injury as a strong and independent person capable of decision making and self care,” Dr. Sachdev says. That includes not being afraid to talk about your own problems. “Any healthy relationship involves both give and take,” he says. You might feel that relying on your friend or loved one who has MS for emotional support would be burdening them, but it’s unlikely they’d feel that way.

“In most cases that person wants to continue to serve in the role of confidant and social support, just as they draw from their social support,” Dr. Sachdev says.

3. Be flexible and understanding.

People who have MS can experience fatigue even after having a good night of sleep, Kathy Costello, a nurse practitioner and Associate Vice President of Healthcare Access at the National Multiple Sclerosis Society, tells SELF. Knowing that fatigue can make it difficult for someone you love to participate in activities you had planned, and being OK if they have to cancel on you, is important, Costello says.

“People with MS have good days and bad days, and these are not predictable,” she adds. “Being ready with a plan B will surely help when a bad day occurs.”

4. Learn more about the disease.

MS can present with symptoms that are visible (like weakness or tremors) but other changes may be felt only by the person experiencing them, Dr. Mateen says. That could include sensory changes like numbness, pain, or tingling; or it could include dizziness, vision problems, or emotional changes.

What Does “Newly Diagnosed” with Multiple Sclerosis Mean?

For many, being newly diagnosed finally gives a name to having some unexplained symptoms. Often before a diagnosis of multiple sclerosis (MS), a person might experience various symptoms, such as visual problems, numbness, or weakness, for example. Not knowing what is wrong and what might happen next is both worrisome and frightening. Once someone has been newly diagnosed with MS, he or she may actually feel a sense of relief in knowing the reason behind the different symptoms. From here, learning more about the disorder and its treatments will be of great help toward developing a positive plan for the future.

MSAA offers a collection of “Multiple Sclerosis information” (MSi) online educational videos and webinars. These are easy to access through MSAA’s website by selecting the topics that are of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may provide helpful information for you. These include:

  • An Introduction to Multiple Sclerosis
  • The Treatment and Management of MS Exacerbations
  • How to S.E.A.R.C.H.™ for the Right MS Therapy For You
  • A Closer Look at Clinically Isolated Syndrome

If you are newly diagnosed, you may have never heard of the term “MS” before, and some people even confuse the name with other disorders. Now, however, the term is linked to you personally. You may feel very alone, but you are not. The fact is, nearly one million people in the United States are estimated to have MS, not to mention as many as two-and-a-half million people in the world. Many individuals with MS continue to work and be active in the community – some you may even know, but you are unaware of their diagnosis.

While finally getting a name for your symptoms may give you a sense of relief, you may also still feel frightened and confused. After all, MS can be quite unpredictable with its hallmark flare-ups and remissions. You may feel you have lost your compass, your perspective, and everything experienced now is under the cloud of this new label of an “MS patient.”

But while you may have been diagnosed with MS, this does not change who you are. You still look the same, have the same family and friends, and you have the same thoughts and dreams. When MS enters the picture, it usually requires some adjustments, but most people can still enjoy a full and productive life.

For more information about MS and people who are living well with this disorder, MSAA’s free Lending Library may be of help. Among the many resources that may be borrowed from the library is the book, Multiple Sclerosis: A Guide for the Newly Diagnosed (TJ Murray, CS Saunders, and NJ Holland, fourth edition, Demos Medical Publishing, 2013). In this book, the authors state: “The disease should not be in control – you are in control of your life, your attitudes, your relationships, your approach to problems, your interests, and your activities.” They advise readers to get more information about MS, to beware of misinformation, and note: “People with MS are happiest and at their best when they live as normally as possible and carry out the activities they enjoy… if you feel like climbing a mountain and do not have symptoms and problems that limit you, go for it!”

Next: Encouraging Information about MS

Heartfelt Advice for People Newly Diagnosed with MS

Coming to terms with a new multiple sclerosis (MS) diagnosis can be tough. The lingering questions, anxiety, and feelings of isolation can be especially challenging. But remember: You have support and are not alone. The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States live with MS, with 200 new cases diagnosed each week.

To help provide some clarity and support, we asked members of our ‘Living with Multiple Sclerosis’ community group what advice they would give to someone just diagnosed with MS. Now, it should be noted that what works for one person may not be the best option for another. But sometimes, a little bit of support from strangers can make a world of difference.

“Take a deep breath. You can live a good life in spite of MS. Find a doctor that specializes in MS that you are comfortable with, and it may take more than one try. There is no miracle cure, no matter what the internet says. Get in touch with your local MS Society. And remember: Everyone’s MS is different. The medicines have different benefits and side effects. Something that works for someone else may not be right for you.”
-Bonnie Winkeler

“My best advice would be try to keep a good attitude! That’s not an easy thing to do when your health is on a steady decline, but a bad attitude doesn’t help you feel any better! Also, make life as simple as possible! The less stress you have, the better!! I’ve had responsibility overload the last few years and it’s taken a toll on my health for the worse. Simpler is better!!”
-Christa Wells Bacak

“Learn all you can, keep the faith, and hope.
I also suggest you keep a journal to track everything that happens, any new symptoms, any unexplained feelings so you can bring it the attention of your doctor! Also remember to always, always ask questions and don’t feel sorry for yourself!
Also remember to keep active, take your meds, and keep a positive attitude! I was diagnosed April 1, 1991 AND yes I was shocked, but I found a great doctor and together we are dealing with it! Hang in there!”
-Dorothy Richards

“Be positive and alert. Not every medical issue or symptom is from MS, so keep your doctors informed of all symptoms no matter how small. Also write everything on a calendar so you know how long you have been experiencing every issue.”
-Theresa S.

“It is overwhelming to read your diagnosis on paper and a lot to take in. The best advice I can give is to take one day at a time. Not every day will be a good day and that’s OK. It’s all new, all overwhelming, and knowledge really is power. Also, make sure to accept the help of others which is very difficult for me to do.”
-Rhonda Lowe

“You’re likely going to get a lot of unwanted advice from friends, family, and others (eat this, drink that, sniff these, etc.). Smile, say thank you, and listen to your MS doctor.
Although well-intended, it can be overwhelming and not compassionate, especially at times when you need compassion the most. Find a group in your area or nearby and get plugged in. There are FB sites as well. Being around people who truly ‘get it’ can be a great encouragement, especially during those difficult times like relapses or poor health. Stay connected with those who know. That’s the best advice I can give you.”
-Debbie Chapman

“Education is power! Learn all you can about MS, make sure you contact your local chapter of the MS society, and join a support group. Take advantage of MS educators that work with pharmaceutical companies that make the disease-modifying drug you use and be medicine-compliant. Request family and friends to also educate themselves about MS and attend doctor appointments and support group meetings. And last but not least, ask for help if needed and don’t say no to those who want to help.”
-Lori Wilson

“If I were newly diagnosed with MS today, I wouldn’t do anything very much differently from what I did almost exactly 24 years ago. But, today, I would have the great benefit of so much added research and information that wasn’t available when I was diagnosed back in 1993. So, I would suggest gathering as much information as possible from reputable places like the NMSS, nearby research hospitals, and MS clinics. And I would be sure to try to find a neurologist who specializes in MS, who I can communicate with.”
-Bobbie Misenti

“When I was diagnosed in 2015, I knew nothing about the disease, so asking your doctor for information and googling it would be super beneficial for anyone. Staying ahead of your symptoms will help you function day to day. Letting your doctor know of any new symptom that you are having and even writing them down so at your appointment, you can let them know every detail.
Be strong, don’t let the definition of multiple sclerosis change your outlook on life and keep you from chasing your dreams. Having a great support system (family, friends, support group) is very important for times when you feel like giving up. Lastly, be active, take care of your body and hold on to your faith.”
-Tara Shider

“I was diagnosed 40 years ago in 1976. Accept your new normal and do what you can when you can! ‘It is what it is’ is my daily motto!”
-Karen Starcher Mullins

“The four biggest triggers for me are heat, stress, not eating, and sensory overload (like with shopping). Triggers are different for everyone. Try to journal whenever you have an episode: symptoms you got, what was happening while or before you got it. Most people get relapsing-remitting MS which means it comes in waves.”
-Shamaniac Reverie

“I was diagnosed with MS when I was 37 and I had three children. It started with optic neuritis like so many others. What I chose to do at that point made all the difference: I told my family and my friends. None of us really knew what it meant at that point.
At the same time, my husband and I started the first microbrewery in the Southwest, so between kids and a new business, I didn’t have much time to allow my disease to take over my life. Immediately, I went to the local office of the National MS Society and volunteered. While there, I not only learned about my disease, but I met numerous other MS people. As soon as I felt confident enough, I got on the board of my local MS chapter.
I’ve been on the boards of not only the MS Society, but the Master Brewers Association and the local Arboretum. I’ve also been a phone volunteer in the local MS office, a nonstop advocate writing letters to and meeting with local politicians, and I’m a current leader of an MS support group.
Now, 30 years later, I can look at my life and say I’m proud of who I am and what I’ve done.
Now the choice is yours. My advice to anyone newly diagnosed with MS is to live your life to the fullest! Accept your challenges, but don’t use your disease as an excuse for what you can’t do. Think of what you’ll be saying to yourself, and others who are newly diagnosed, 30 years from now!”
-Mary Thompson

“When I was first diagnosed I had crippling migraines and seizures, that’s right seizures. While I only had 8 of them, they are really scary!
My advice to you is to live a day at a time. Find things that stimulate your mind. I like doing math. Exercise when you can. Set goals and find ways to achieve them. MS is going to teach you understanding and appreciation for what you have in life. It will stress appreciation of the small things, like being able to walk without assistance, remembering dates and times, having a day without pain, and holding in your bodily functions. MS will also teach you, if you allow it, to look at life in a totally different way.
You’re going to have hard times in your life ahead. Times that will stress your love of people, times that will stress your family and friendships. During these times give your love freely to everyone, grow into a person you’re proud to be.
Lastly, and I want to really stress this, be thankful for this disease. Thank those around you for their love, understanding, and help. Thank the doctors and nurses for all their help. Lastly, thank your Father in Heaven for this amazing view of the world you’re about to gain. Everything that happens to us is for our good, if we learn something from it.”
-James Justice, MBA

Diagnosed with MS. Now What?

There was something in the words “You have MS” that filled me with mixed emotions and changed my life. The different stages of grief I went through after my diagnosis somehow helped me come to terms with MS.

If you are newly diagnosed, it’s important that you know that these feelings are normal. Yes, they may recur, but things do get better. There have been days where I have felt chronic pain and others where I have sat feeling sorry for myself. And there have also been good days. I’ve learned to accept that my body has new limitations. I am still the same person and am still able to do things. I am just mastering new ways of doing them. My diagnosis is not what defines me; it has opened a new chapter in my life. It has given me a new outlook on life and I know I want to live it to the fullest of my potential.

After my diagnosis, I started to put my health into perspective. I began looking after my physical and mental wellbeing and started to eat healthier. I feel that I am one of the lucky ones – I’m fortunate enough that my body allows me to do gentle exercise. It’s important to remember to listen to your body and what it is telling you. If you are having a bad day where you need to rest, don’t be afraid to use your voice. The people who love and care for you will understand if you have to cancel plans due to fatigue or bad symptoms.

My diagnosis has given me a thirst for a better life and sparked a drive in me to pursue my dreams and ambitions. I know MS couldn’t stop me from achieving my goals but it has definitely changed my perspective on things, especially chasing my dreams. I learned not to worry about the things that aren’t actually important but rather to appreciate the little things that are. I have struggled since my diagnosis but it has also put things into perspective for me. I decided to return to education to do my Masters in primary education and I honestly don’t think I would have had the courage to do it if it wasn’t for diagnosis.

Being given an MS diagnosis is tough and it can be scary but I have tried to use it to encourage me rather than frighten me. Research and educate yourself on MS using the wealth of material that there is available. Don’t rely on Google to tell you what’s going on! Educating yourself gives you the knowledge to educate your friends and family and to also spread awareness. If you have recently been diagnosed with MS and are worrying about what happens next, remember MS is not a death sentence. You can still do the things you want to do in life, you’ll just be doing things a bit differently.

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