Navigating the Most Invisible Symptoms of MS: Mental Health Challenges

The uncertainty of the disease, the unpredictability of relapses, and the constant adjustments to daily life with MS can take a toll. I’ve found effective strategies to deal with anxiety and depression.

Living with multiple sclerosis (MS) can be a lengthy, unpredictable journey in which physical and emotional aspects are closely intertwined. While visible symptoms like walking and balance difficulties often grab the spotlight, the disease’s effects on mental health are equally exhaustive.

When I was first diagnosed 19 years ago, I had no clue how much the disease would affect me — or in how many ways.

As the years passed, I noticed gradual shifts in my mood, thinking, and overall mental health: I felt more stress, hopelessness, and fluctuations in my levels of general happiness. It became evident to me that MS wasn’t just a physical challenge. It was a mental one as well.

Join the free MS community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

The diagnosis challenge

When people begin having their first symptoms of MS — but before they know what’s causing them — many feel confronted with feelings of uncertainty, suddenly questioning their sensations and creating hypothetical scenarios in their minds.

The road toward an MS diagnosis is a demanding process. It typically involves a series of medical tests, countless consultations, and that ever-present cloud of uncertainty.

As I sat in various clinicians’ offices — my primary physician’s, my ophthalmologist’s, my neurologist’s, and the ER — I was surrounded by clinical white coats and the unsettling buzz of medical equipment. My anxiety escalated with each test result, whether it provided some clarity or unraveled fresh questions.

This prolonged uncertainty developed into depressed feelings. It was like navigating a winding road without a clear destination in sight. Like, “What’s happening to me?”

This demanding pursuit of a diagnosis significantly impaired my mental well-being, gradually wearing down the resilience and optimism with which I started the process.

The unseen struggles

The uncertainty of the disease, the unpredictability of relapses, and the constant adjustments to daily life with MS can definitely take a toll.

Anxiety and depression often accompany MS, and dealing with them becomes part of the lifestyle. Here’s what that might look like:

• Anxiety: The fear of the unknown, the worry about the next relapse, the stress of managing symptoms — it’s like living with a constant sense of unease. Constantly being in this heightened state of alertness sometimes causes me exhausting anxiety.
• Cognitive changes: MS can also affect cognitive function, resulting in what’s often referred to as “brain fog” or “cog fog.” Dealing with forgetfulness, difficulty concentrating, and reduced mental clarity can become a constant struggle. It can be so frustrating and lead to feelings of inadequacy and lack of self-worth.
• Depression: MS-related challenges, like physical limitations, fatigue, cognitive issues, and the loss of certain physical abilities, can lead to feelings of sadness and hopelessness. Coping with these changes can be emotionally overwhelming, and it’s not uncommon to experience depression episodes.

The isolation factor

Another aspect of MS that affects mental health is the sense of isolation.

Physical limitations and symptoms can make it challenging to maintain an active social life. Friends and family may not fully understand the invisible struggles, leading to a sense of loneliness and disconnect.

This happened to me later in my disease progression. As my foot drop became more prominent and I couldn’t keep pace with others, I stopped going out in public as frequently. To avoid embarrassment from being seen struggling to walk, I kept myself from social settings.

I didn’t even do it on purpose. As my symptoms worsened, I simply felt less motivated to go out until all of a sudden I realized I was a homebody. Loneliness seems to creep up on you before you realize you’ve detached from your social circles.

Finding light in the darkness

Despite the challenges, there is hope. Managing MS and its impact on mental health is possible with the right support and strategies.

Here are some key approaches that have helped me along the way:

Seeking professional help

THIS! Don’t hesitate to reach out to a mental health professional if you’re experiencing anxiety, depression, or cognitive changes. Therapy and counseling can provide valuable tools for coping with the weight of MS.

A neuropsychologist can help with identifying cognitive symptoms related to MS and help you manage them as part of your MS care team.

For me, cognitive behavioral therapy (CBT) has been helpful. It allows me to give voice to whatever’s stressing me. Having a psychologist lead me toward science-based tactics gave me the confidence to deal with my angst responsibly.

And it’s more affordable than I realized. For a long time, I had no clue that my insurance covered behavioral health. In fact, insurance has to cover mental health, thanks to the Affordable Care Act and the Mental Health Parity Act before that. I wish I’d known earlier! Once I found that out, I simply had to find a therapist in my network.

Building a support system

Connecting with support groups and individuals who understand the challenges of life with MS is so important.

Sharing experiences and insights with people who have faced similar challenges can be incredibly comforting. Experiencing this type of solidarity can also help steer us away from isolation.

For years, I wouldn’t talk about my MS. I used to say I preferred to be private about my condition. In retrospect, I realize that was just my excuse to avoid talking about the topic.

Unfortunately, it shielded me from connecting with anyone who also was dealing with the same condition. I was 15 years into struggling with MS alone before I noticed there was a huge online community of people supporting each other. I felt silly when I realized I didn’t have to go through it alone.

Grounding with mindfulness and meditation

Practices like mindfulness and meditation have been invaluable in managing my stress and anxiety. They offer a way to stay grounded and present, even in the face of uncertainty.

For me, I found blending meditation and physical stretching through yin yoga to be invaluable for my physical and cognitive stability. Also, quieting my mind by limiting screen time has helped keep me calm and present.

Engaging in exercise and physical activity

Engaging in regular physical activity, within your capabilities, can have a positive effect on both physical and mental health. It releases endorphins, reduces stress, and boosts mood.

I love low impact aqua aerobics and barre exercises to give me a good workout while keeping my body temperature controlled.

Embracing adaptive strategies

Whether it’s journaling, using assistive devices, setting realistic goals, or creating a structured routine, finding what works best for you can alleviate some of the mental burden.

I resisted using my cane for a long time, but eventually, my relationship with this walking stick became more positive. At first, I viewed it as a symbol of deficiency and that made me feel a lot of shame until I decided to shift that perception and embrace my cane as a tool of empowerment.

Using this cane didn’t mean I couldn’t do things. Rather I realized it allowed me to do more — and that made me feel like I was capable of anything.

Remembering self-compassion

Be kind to yourself. Living with MS is challenging, and it’s OK to have moments of frustration, sadness, or anxiety. Treat yourself with the same compassion you’d offer a friend facing a similar situation.

Give yourself grace. I remind myself of this all the time.

The takeaway

While MS has challenged my mental health at times, it has also taught me resilience and the importance of seeking support.

By acknowledging the unseen struggles, reaching out for help when needed, and implementing coping strategies, it’s possible to navigate the MS journey with emotional stability.