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Finding the Right Multiple Sclerosis Treatment

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PHYSICIAN VOICES
Managing Multiple Sclerosis: What I Want My Patients of Color to Know

Medically Reviewed By Alana Biggers, M.D., MPH

As a Person of Color with MS, you may face challenges finding the care you need. As a Physician of Color, I want my patients to know that there is a lot they can do to take control of their health and feel empowered to get the best care possible. 

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1. Know you have options

The first thing I tell people with MS is: you have options. Do your research. In all parts of our lives, we all have teams that help us to succeed. Your team can consist of a hairdresser who does your hair, plus a nail tech who does your nails, plus someone else who does your eyebrows, right? Or your team may include a handyman, a plumber, and an appliance repair person. And when we get certain services like this, we do our research to find the best person for us. 

If somebody does a bad job, we don’t keep going back. If someone gives you a horrible haircut, you’re not going to keep going to that person expecting a different result. I want patients to apply these same standards to their healthcare teams. 

If you’re not getting what you need with your MS doctor, keep looking. You may not find what you need with the first or second neurologist you see, but maybe that third one is the person who really listens to you. Studies indicate Trusted Source JAMA Peer reviewed journal Go to source that people prefer doctors they identify with, who look like them. However, the truth of the matter is there are very few Neurologists of Color. Not everyone is going to have a Black, Hispanic, Asian, or Native American neurologist. But there are many empathetic, caring, culturally competent neurologists out there, and for a chronic, lifelong disease like MS, it’s worth it to find the right one for you.

A culturally competent doctor will make sure they’re aware of their own biases and ensure they’re not bringing them to the appointment. They will really listen to you and try to empathize with your experiences. They’ll recognize that your experiences are real and valid and acknowledge that they don’t know everything about everybody. 

Even as a Person of Color myself, I don’t know everything. I am Black, but I don’t know the experience of every Black person that comes into my office. Being a culturally competent doctor means having humility and recognizing that we don’t know everything. My expertise is in treating people with multiple sclerosis. Your expertise as a patient is living in your own body and managing your MS in real ways. I’m not an expert in living in your body. That’s why I try to work together with my patients to come up with the best plan for their unique situation.

2. Connect with an MS specialist

Even if you do love your doctor, I encourage everyone with MS to see a neurologist who subspecializes in MS at least once. There are so many amazing general neurologists who care for people with MS. But an MS specialist will keep abreast of all the newest therapies, will treat MS almost exclusively, and will be a helpful person to make a connection with at least once. If you can’t see them all the time, that’s okay. You can check in with them just to make sure you’re on track; that what your general neurologist is prescribing is the appropriate way forward.

3. Do your homework

I try to educate my patients as much as possible about their MS, and I also advise them to learn all they can about it. Once you receive a diagnosis, don’t just sit on your laurels. Know that there is work for you to do also. Many of my patients are well versed in MS and bring me articles and studies I may not have seen. Do your research, understand your condition to the best of your ability, and stay engaged with your care as much as you can.

In that same vein, I love when my patients ask questions. Don’t be afraid to ask for clarification on something your doctor is explaining. If you’ve heard of a new medication or strategy, ask your doctor about it – I’m happy to share my thoughts on supplements or exercises.

4. Turn to others for support

Everyone needs support, especially when you’re living with a chronic illness like MS. Whether they’re your spouse, a child, a parent, a friend, or someone else you trust, it’s crucial to involve care partners in your MS experience and bring them to your doctor’s appointments. They can help you remember things to stay on track, and they also might notice things you don’t notice. They can help offer the full picture so we can accurately treat your MS.

The most important thing is to realize you’re not alone. Find a community of folks with MS who you can talk to and lean on. There are big MS societies and there are also patient-powered organizations. The National MS Society is a great resource, as is the Accelerated Cure Project. I also recommend We Are ILLmatic, a support organization for Black women with MS. 

Find a mix of the larger organizations and the groups run by people living with your condition. It’s critical to get information your doctor thinks is important but also the information that the patient community thinks is important. 

5. Take care of your mental health

One thing our society commonly ignores is mental health. Certainly, faith and religion play a large part in maintaining mental health, but sometimes people think it can be a substitute for seeking professional services. I want patients to know it’s not an “either/or;” rather it’s an “and.” 

I recommend that all my patients who receive a diagnosis of MS consider therapy or counseling, because it’s a lot, right? There’s ordinary life stress, and then there is this additional huge stressor of MS, particularly when it comes to the fear of the unknown and uncertainty of what will happen in the future. 

In some cases, people may benefit from mental health medication as well, temporarily or long-term. Medication can help give you the boost you need to take better care of yourself and your MS. It’s important to be open to all the ways one can support mental health. That might also mean finding ways to relieve stress, like yoga, mindfulness, meditation, exercise, and more. 

I want my patients with MS to recognize that you are your own best advocate. In a perfect world, the medical system would work seamlessly to give you everything you need, but that’s not always the case. Don’t be afraid to speak up for yourself, ask questions, and seek out what you need.

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Medical Reviewer: Alana Biggers, M.D., MPH
Last Review Date: 2023 Aug 9
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