5 strategies to advocate for yourself during SPMS treatment

Self-advocacy is the ability to take an active role in your healthcare, including treatment decisions. It involves communicating your questions, needs, and concerns to your healthcare provider, and being open and honest during your appointments. It is an important component of shared decision making in multiple sclerosis (MS).

Self-advocacy can be especially important if MS progresses. Most people with MS are initially diagnosed with relapsing-remitting MS (RRMS), a form of the disease where a person experiences episodes where symptoms worsen (relapses) and periods where symptoms improve (remissions).

Many cases of RRMS will eventually progress to secondary progressive MS (SPMS). With SPMS, symptoms progress steadily without periods of remission. This is sometimes described as “silent progression” because symptoms become more severe and disability can accumulate gradually. This can make progression more difficult to identify, especially with non-relapsing SPMS, where there are no relapses to mark changes in the disease.

Being able to communicate treatment needs and raise concerns is critical during conversations with a healthcare team.

Self-advocacy may come more naturally to some people and less naturally to others. However, it’s something that a person can get better at with time and practice.

Here are a few strategies that can help.

Prepare for your appointments

This is an essential strategy when managing any chronic health condition. Before each appointment:

• Set a goal for the appointment, such as discussing a specific symptom, concern, or treatment.
• Practice how you want to describe a symptom or concern. You want your descriptions to be concise, but also accurately communicate what you are experiencing.
• Write down a list of topics and questions that you need to cover and prioritize this list, with the most important items at the top.
• Gather any information your healthcare provider needs, such as health insurance information or records from another healthcare provider.

Keep a symptom journal

If you aren’t already, start keeping a symptom journal. Use it to keep track of symptoms and changes in symptoms. Because SPMS can cause gradual changes, also track how you are feeling each day, anything that seems more difficult, or anything that you are finding challenging. This can help you recognize patterns over time, providing important information to you and your healthcare provider.

Be clear and direct when you need to be

You need to be able to speak honestly about your treatment needs and concerns with your healthcare providers. This is one of the reasons it helps to have a goal for an appointment, and notes and questions to refer to during your appointment.

You also need to be able to tell your provider when one of your needs or concerns is not being addressed, or when you need more information.

Here are some strategies for when you are talking to your provider.

• Be honest. This includes being honest when discussing how MS is affecting your life and when answering your provider’s questions.
• If something is confusing or complex, ask your healthcare provider for a different explanation. Also, repeat the information back to your provider.
• Symptoms that affect things like bowel and bladder control, sex, and memory can be uncomfortable to discuss. It’s normal to feel shy. Try telling your healthcare provider that you need to discuss something that is uncomfortable.
• Use statements that start with “I” when you need to be direct or concise. For example, “I want to know more about my treatment options.”

Learn about treatment options for SPMS

SPMS often requires a different approach to treatment than other types of MS. Different medications are used to treat relapsing SPMS and non-relapsing SPMS.

Take time to learn about what medications are available for the type of SPMS you are diagnosed with, including disease-modifying therapies and medications that can help manage specific symptoms, such as problems with sleep, bladder control, and fatigue. In addition to medications, physical therapy, occupational therapy, and other supportive therapies are important parts of a treatment plan.

It’s worth mentioning that treatment options for SPMS have improved in recent years and continue to improve, with new drugs becoming available.

Bring a loved one for support

Consider bringing a loved one to your appointment for support. In addition to being a source of emotional support, a loved one can take notes, ask questions, help you keep track of what you need to discuss, and help you with steps you need to take after the appointment.