Estimated reading time: 6 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Living with multiple sclerosis (MS) is emotionally challenging. As a chronic condition, many people find themselves struggling with both the physical and mental side effects. But for those with non-relapsing secondary progressive multiple sclerosis (nrSPMS), the emotional toll can feel even heavier. Unlike relapsing forms of MS, where symptoms come and go, nrSPMS is when symptoms generally decline without periods of remission. This can make it hard to keep your spirits up, as there are fewer times of relief from the disease’s progression. The loss of mobility, independence, and the unpredictability of symptoms can make people feel frustrated and sad over the life they once had. Caregivers, too, often go through emotional distress, as they see these changes and have to adapt to more responsibility.
Today, we thought we'd look at the difficulties of dealing with a chronic health condition from a mental perspective. Let's focus on the challenges of processing crucial health information and providing insights into coping strategies.
Emotional Burden of MS
Getting a diagnosis of a chronic health condition can trigger a whirlwind of emotions. These often include fear, anxiety, frustration, and sadness. The realization that life will never be the same can be a lot to bear! This usually leads to a sense of loss and uncertainty about the future. During this emotional turmoil, you may find it hard to face the full extent of a diagnosis, including the health implications and lifestyle changes.
For both patients and caregivers, one of the hardest parts of nrSPMS is the uncertainty. People with this form of MS may struggle with anxiety about their ability to work, maintain relationships, or stay independent. Meanwhile, caregivers may worry about how to provide the best care, manage their own well-being, and adjust to changing demands. Many caregivers also feel guilt, questioning whether they are doing enough or feeling helpless as their loved one’s condition gets worse. However, some caregivers find deep purpose and meaning in their role.
Avoidance and Denial
One common but not universal response to a chronic illness is avoidance. Facing the reality of your situation and diving into the details of treatment options, potential complications, and long-term prognosis can feel like stepping into a bottomless pit. As a result, you may develop a tendency to block out or deny information related to your health. Instead, you might choose to focus on day-to-day tasks and distractions to feel normal.
The Health Consequences
While avoidance may give you temporary relief from emotional distress, it can have long-term consequences. Ignoring important health information can lead to missed opportunities for early intervention, delayed treatment decisions, and more anxiety about the unknown. Moreover, avoiding discussions about one's condition may strain relationships with healthcare providers and loved ones who want to give you support and guidance.
The emotional strain of nrSPMS does not just affect mental health, it can have physical consequences, too. Stress and depression can make fatigue worse, increase pain sensitivity, and even contribute to cognitive difficulties for the person with MS. For caregivers, the emotional burden can lead to burnout, exhaustion, and feelings of isolation. Caregiving can be deeply rewarding, but it is also demanding. Caregivers need support just as much as the person they are caring for.
Coping Strategies
Despite these challenges, there are ways to cope with the emotional burden of nrSPMS! For patients, connecting with a support system can help with feelings of loneliness. That can be through family, friends, therapists, or MS-specific support groups. Learning stress management techniques can also help with emotional well-being! Try exercises like mindfulness, gentle exercise, or journaling. Caregivers should also get assistance by joining caregiver support groups, setting aside time for self-care, and asking for help when needed. Open communication between patients and caregivers can strengthen their relationship and make navigating the disease a shared effort instead of an individual struggle.
Despite the challenges of facing a chronic health condition head-on, there are strategies individuals can employ to navigate the emotional burden and overcome mental barriers:
- Acknowledge Your Feelings: It's important to give yourself permission to feel the full range of emotions that come with chronic illness. Whether it's sadness, anger, or fear, acknowledging and accepting these feelings is the first step toward emotional healing.
- Take Small Steps: Instead of trying to process all the information about your condition at once, break it down into manageable chunks. Set aside dedicated time each day to review educational materials or discuss concerns with healthcare providers. Take breaks when needed to stop yourself from being overwhelmed.
- Seek Support: Don't hesitate to lean on your support network for guidance and encouragement. Whether it's friends, family members, or online support groups, connecting with others who understand your journey can provide valuable emotional support and perspective.
- Practice Self-Compassion: Be kind to yourself during this challenging time. Recognize that coping with a chronic health condition is a journey, and it's okay to have moments of struggle. Practice self-care activities that bring you comfort and joy. Spend time in nature, practice mindfulness, or indulge in creative pursuits.
- Consider Professional Help: If feelings of anxiety or depression become overwhelming, consider seeking help from a mental health professional. Therapy can provide a safe space to explore your emotions, develop coping skills, and gain a deeper understanding of your experience with chronic illness.
Most importantly, both patients and caregivers should remember that their feelings are valid, and it’s okay to seek help when needed. nrSPMS may bring challenges, but these coping strategies can let you navigate the emotional complexities of chronic illness. With them, you can gradually break through the mental barrier of avoidance and approach your health journey with resilience and courage. Remember that you are not alone, and support is available every step of the way.
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