Finding Your Voice: A Neurologist’s Tips for Self-Advocacy

You are an expert on your own body and should be the center of your healthcare team. That’s why I encourage my patients and anyone living with a chronic disease to play an active role in their care through self-advocacy.

I recognize that getting a neuromyelitis optica spectrum disorder (NMOSD) diagnosis can be scary and overwhelming. Advocating for yourself may seem challenging at first, but remember, your doctor is your teammate. They are there to make the process of learning how to navigate life with NMOSD as smooth as possible.

I encourage you to be open with your doctor about your symptoms, treatment preferences and experience with NMOSD. You have a voice, and here are my tips to help you make sure your voice is heard throughout your journey:

1. Educate yourself on NMOSD.

You’re not expected to be a neuroscientist, but it’s important to educate yourself to the best of your ability. Equipping yourself with an understanding of the disease will help you better prepare and advocate for yourself when you meet with your doctor.

In addition to learning about NMOSD, I encourage you to research the FDA-approved treatment options to determine the right course of action for yourself so you can have a thorough conversation with your doctor.

If you are not in a position to do your own research, lean on your care partner or loved one to help you stay up to date on important information.

2. Prepare for each doctor’s appointment.

Bring a list of questions and discussion points to each doctor’s appointment. Your doctor will have an agenda, so having your own list of topics prepared will help make it easier for you to share what you want to talk through.

When preparing your discussion points, I recommend prioritizing your top questions in case you can’t get to all of them. Consider any new or changing symptoms to bring up to your doctor, even if you’re unsure if they’re related to NMOSD.

If you’re exploring treatment, think about your treatment goals so you can discuss those with your doctor and understand what may be possible. Also think about what fits best with your lifestyle. Do you prefer a treatment that can be done less frequently? Are you finding yourself able to be doing the things you’d like to do in your life right now? Even if you’re already on treatment, don’t hesitate to talk to your doctor about your level of satisfaction or trying something different to ensure that your treatment goals align with your life goals.

Remember, your doctor wants to hear from you because you know your body better than anyone else.

3. Build your support system.

Never underestimate the importance of having a support system. Not only does a strong support system help make daily life with NMOSD more manageable but it can also make speaking up for yourself easier as well.

For instance, care partners might notice things you don’t see that could help as you think through questions for your doctor. If you bring a care partner to appointments, they can help keep you on track with your questions and even take notes for you.

Doctors are an important part of your support system as well. If you don’t feel like your voice is being heard, then you can try seeing someone else. Even if you’re happy with your doctor, if you don’t already see one, I recommend seeing an NMOSD specialist at least once.

It’s also valuable to connect with other people who are living with NMOSD. Even though you have loved ones and physicians working to help you, none of us understand firsthand what it’s like living with that condition. There are many support groups now for both people living with NMOSD and their care partners that I encourage you to consider joining.

4. Take advantage of helpful resources.

Thankfully, there are many resources available now to help people living with NMOSD learn more about the disease. I’ve been involved with advocacy organizations, such as The Guthy-Jackson Charitable Foundation and The Sumaira Foundation, which provide a wealth of educational information.

Additionally, you can find resources on managing life with NMOSD, including guidance for navigating vision or mobility changes. You can also explore tools to assist you with the financial aspects of living with a chronic autoimmune disease like NMOSD.

I encourage you to connect with your doctor and others living with NMOSD to see what other resources are available in your area.

As you continue your health journey, you can maintain strong self-advocacy by constantly learning, evaluating care and adding to your support system. Remember that you know yourself better than anyone else, and your voice matters.

About Dr. Mitzi Joi Williams

Dr. Mitzi Joi Williams is a board-certified neurologist, fellowship-trained MS specialist, author, speaker and researcher. She is an MS expert and is passionate about supporting those affected by neurologic autoimmune disorders. She is also the Founder and CEO of Joi Life Wellness Group Multiple Sclerosis Center^™️, where she provides specialized care for those with Autoimmune Demyelinating Diseases including MS and NMOSD.