In 2011, Fatimah Aulaqi, now 30, was feeling fatigued, with occasional numbness, paralysis and double vision. Her doctor suggested she get an MRI, which revealed multiple sclerosis (MS). Fatimah had never heard of MS, and as she learned more about the autoimmune disease, she fluctuated between feeling devastated and being in denial about the new health challenges she would face. She wondered how she would get through school, find a job and whether she’d be able to have a family.
After some time, Fatimah began to focus on being positive and healthy, sharing her journey with others through social media. Today, she works as a fitness trainer and nutrition specialist, striving to be a positive inspiration to others with chronic diseases and disabilities.
As awareness and understanding of MS continues to grow – including through recently-released criteria to improve the speed and accuracy of an MS diagnosis – more people in their 20s and 30s like Fatimah are finding out they have MS. However, the unique issues they face because of their age are sometimes overlooked, and often available resources are meant for those in a later stage in life.
Fatimah recently spoke with Dr. Tamara Miller, a neurologist in private practice in Fort Collins, Colorado, who treats many younger people living with MS, including college and graduate school-aged students. They talked about navigating relationships, work, diet, exercise and other questions Fatimah had always been afraid to ask.
FATIMAH: When I was first diagnosed, I didn’t know what MS was. I thought it was maybe a form of cancer and that I was going to die soon. I was in shock. How do other young people react when they are diagnosed?
DR. MILLER: When a patient is diagnosed in their 20s or 30s – most of them female – they're often devastated. Sometimes they’re in denial or become angry. They ask a lot of questions: Will I ever get married? Will someone love me? Will I finish school? Can I have children, and can I take care of those children?
Today, MS is not a death sentence and does not make someone “damaged goods,” a phrase I’ve heard my patients use. Doctors have a variety of tools now – including newer disease-modifying therapies and lifestyle adjustments – that can help people with MS live their best lives.
FATIMAH: What’s the most important thing you tell young people when they’re diagnosed?
DR. MILLER: Take your medicine! My number one piece of advice for someone recently diagnosed is to start – and stay on – disease-modifying therapy. MS is often most active earlier in the disease, and there can be a lot going on beneath the surface.1,2 With that in mind, it is important that people work with their doctor to find a treatment that fits their lifestyle, schedule and needs.
There are several high-efficacy treatment options available today with varying levels of side effects, which have been shown to reduce relapses and delay disability progression. Treatment is an important joint decision between you and your doctor, so be honest about how you are feeling and what you are comfortable with, because we have so many options available.
FATIMAH: This is a time of life when people are figuring out relationships and having MS can make that so much harder. I’ve heard from people they are scared to share that they have an illness because they’re worried no one will want to be with them. It happened to me before that someone broke up with me when they found out I had MS.
DR. MILLER: It can be really difficult. I had a patient who thought things were going really well with this girl, but when he told her he had MS, she dropped him and even unfriended him on Facebook. I told him it’s her loss. When you feel comfortable in a relationship and are talking about really personal things, that might be the best time to tell them. If they leave you, forget it. You don’t need them. Yes, being in a relationship with someone with MS can be unpredictable. But life is unpredictable.
FATIMAH: What about finding a support group or other young people living with MS? I’ve found a lot of support groups seem aimed at older people, and I often can’t relate.
DR. MILLER: It’s important to find a support group that's supportive and right for you. That may mean looking for a group with other younger people at a similar stage in life, and not older, more progressed patients. You want one that helps you stay optimistic and can relate to experiences you’re going through. Ask your doctor for suggestions or check out support resources listed by the National MS Society.
FATIMAH: One of my biggest fears is getting pregnant. I’ve heard you could lose energy or power in your legs, and I’ve always been afraid to ask my doctor. I sometimes wonder if I should just adopt.
DR. MILLER: This is a tough issue for people living with MS, but many doctors will tell their patients that if they want to get pregnant, go for it. Many people with MS are able to get pregnant, under their doctor’s supervision.
We continue to learn more about MS, and there have been advancements with treatments that can significantly delay disability. If you do have a relapse during pregnancy, or after you have the baby, your doctor can address that. It is most important to have an open dialogue with your doctor and your partner.
FATIMAH: As a personal trainer, I try to eat well, exercise and do guided meditation. What kind of advice do you give to your patients about lifestyle choices?
DR. MILLER: There is a lot of research out there about the importance of maintaining a healthy lifestyle with MS. For example, having a well-balanced diet that includes the basics we all know about: eat a lot of fruits and vegetables instead of chips and cookies, and avoid sugary drinks and processed foods. Especially for college-aged and younger patients, they should limit alcohol intake because if you consume a lot of alcohol, you can have short-term effects that may mask symptoms of MS. As always, it is most important to have an open dialogue with your doctor.
FATIMAH: And exercise? For me, I’ve learned that I sometimes have to be careful when I run or workout, especially if my legs start to shake or I’m having mobility issues.
DR. MILLER: Here in Colorado, one of the healthiest states in the U.S., a lot of my patients hike, bike, kayak and run. Everyone’s different when it comes to exercise and MS, but certainly many people want to stay active. As an example, there are some people with MS who can’t move their legs, so they need exercises that work their upper body strength. You can set goals and keep it simple. You want a partner or trainer, and you want to stay cool and hydrated with cooling vests and water bottles. If you get tired, stop. It’s not a sprint, it’s a marathon. So exercise regularly, eat balanced meals, breathe deeply, organize your time and take breaks.
FATIMAH: I worry when I apply for jobs and check the box that says I have a disability that I won’t get the job.
DR. MILLER: Many newly-diagnosed patients are new to the work force, or may have just graduated college and are now interviewing for a job, and it is very competitive. It is a personal decision whether you disclose your health status, but I generally recommend it if you will need specific accommodations. It’s important to look into your state laws and consult a lawyer if you have questions. The National MS Society also offers resources and counseling on employment questions for people with MS, and Can Do MS offers a webinar on employment issues as part of its young adult series.
FATIMAH: What advice do you give to friends and families supporting someone with MS?
DR. MILLER: While loved ones need to be supportive, it’s also important for them to take care of themselves. You have to take care of yourself to take care of another person. So, if it gets to be too much, take a walk or a bath, go get an ice cream, or just do something for yourself, and then come back and regroup.
FATIMAH: I keep hearing it’s a new day for MS. How is it different having MS today than, say, 30 years ago?
DR. MILLER: We’ve come so far in our understanding of the disease and the treatment landscape has evolved. The first disease-modifying therapy was approved by the U.S. Food and Drug Administration (FDA) in 1993, and now we have a lot of them, giving me many tools in my toolbox.
1 Cleveland Clinic. Study: It’s Best to Treat Your MS Symptoms Early; Disease Often is Most Active in Beginning Stage. https://health.clevelandclinic.org/study-treat-ms-symptoms-early-delay-onset/. Published 18 Aug. 2016. Accessed 18 Oct. 2018.
2 Kappos, Ludwig, et al. “The 11-Year Long-Term Follow-up Study from the Randomized BENEFIT CIS Trial.” Neurology, Lippincott Williams & Wilkins, 6 Sept. 2016, www.ncbi.nlm.nih.gov/pmc/articles/PMC5027814/.