How to Boost Your Emotional Resilience When You Have SPMS

Living with a chronic, progressive condition such as secondary progressive multiple sclerosis (SPMS) can affect both your physical and mental health. SPMS results in a gradual decline in function over time, which can take a toll on your emotional health.

The good news? Implementing the right strategies can help you cope with emotional challenges and feel good while living with the condition.

The symptoms of SPMS vary from person to person — as can the toll it takes on your mental health. “This makes managing this disease a uniquely challenging emotional experience,” says Abigail Vacca, a senior manager and MS Navigator at the National Multiple Sclerosis Society (NMSS) in Hartford, Connecticut.

• Sadness
• Agitation or irritability
• Changes in appetite
• Changes in sleep habits
• Disinterest in usual activities
• Fatigue
• Feeling worthless
• Guilt
• An inability to think clearly or concentrate

“SPMS can cause feelings such as anger and resentment at your body, due to the loss of hobbies that you may not be able to participate in any longer or the loss of full-time employment,” says Vacca. It can also lead to low self-esteem and social isolation. “It may even feel like you are losing part of your identity,” she adds.

Fortunately, there are steps you can take to cope with the emotional challenges of SPMS:

1. Accept your new reality. Acknowledge the emotional shift and grief you may be experiencing around the condition evolving into SPMS. Try to redefine your sense of control, now that there’s even more unpredictability and fewer treatment options. Accepting SPMS does not mean resignation or giving up. It means focusing on the best way forward.
2. Find SPMS-specific support. Connecting with others who are dealing with SPMS can help you feel less alone on your journey. Consider joining an SPMS support group through an MS organization. The NMSS offers one-on-one connections with other people who have MS and various online support groups.

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   You can also look for local MS support groups or ask your healthcare provider for recommendations for an SPMS support group in your area.

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3. Provide your family and friends with resources. Chances are, your loved ones want to help but don’t know how — especially as SPMS symptoms evolve. You may not have the resources to educate them, but you can connect them with someone who does. Ask them to reach out to an MS Navigator, who can answer their questions and provide support, through the NMSS.

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    “Allowing them to understand the disease will help them be more empathetic to what you are dealing with,” says Vacca.
4. Set boundaries. “Don’t be afraid to set boundaries. You are the expert on you, and you have to do what works best for your body,” says Vacca. “For example, if you find that you experience fatigue later in the day, explain [to family and friends] that you prefer to do things with them in the morning, when you have more energy.”
5. Try stress-reducing activities. Stress can worsen SPMS symptoms, so it’s important to find ways to relax. “While you may have to pivot away from the hobbies you originally loved, engaging in new activities can be a powerful outlet to express emotions,” says Vacca. Options can include adaptive exercises, such as tai chi or yoga, or mindfulness and relaxation techniques, such as deep breathing and meditation.

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    Research has shown that meditation is associated with less depression and a greater sense of control over life in people with MS.

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6. Practice self-care. Eating a nutritious diet, getting enough sleep, and staying active can boost your mental health. In fact, a study of people with MS found that physical activity was associated with less depression and fatigue.

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7. Give yourself grace. Living with SPMS makes you strong and resilient, even if you don’t always feel that way. “It takes incredible tenacity to live with this type of chronic illness,” says Vacca.

Because SPMS is such a complex condition, it can be hard to tell if what you’re experiencing is everyday stress or something that requires professional support. Talk to your doctor if anxiety, depression, or psychological distress is making it difficult to live your daily life. Signs you may benefit from professional help include:

• Struggling to get out of bed in the morning
• Missing appointments or skipping out on responsibilities
• Withdrawing from family and friends
• Losing interest in activities you used to enjoy
• Experiencing persistent sadness or hopelessness
• Having thoughts of self-harm

Ask your healthcare provider for a referral to a mental health professional who works with people who have MS or other chronic health conditions. “Working with a mental health professional, such as a therapist or counselor, will provide you with a safe space where you can discuss your true feelings. Often, they will guide you towards methods of mindfulness. This might include meditation or cognitive behavioral therapy (CBT),” says Vacca.

Remember that seeking help for your mental health is a sign of strength, not weakness. “Think preventatively instead of reactively. Getting a referral from your doctor for a mental health provider is key to putting yourself first,” says Vacca. “Consider it the initial brick you can lay as the foundation of your lifelong journey with SPMS.”

• Emotional challenges, such as anxiety, depression, and grief, are common when living with a progressive condition such as secondary progressive multiple sclerosis.
• To stay mentally strong, lean on family and friends and find in-person and online support from others with SPMS, who understand what you’re going through.
• If stress or anxiety is making it hard to live your daily life, ask your doctor for a referral to a mental health professional for additional support.