ABOUT
Mental Health & Well Being & Finding Support
You're not alone
Living with epilepsy is about so much more than just managing seizures. It can impact how you feel, think, and connect with others. For young adults, this journey often comes with unique challenges like anxiety, depression, and stress. The good news is you aren’t alone – and there are effective ways to find support and cope. In this post, we’ll explore common emotional struggles in epilepsy and share tips on therapy, peer support, and mindfulness. We’ll keep it conversational and supportive, with plenty of practical advice (and zero complex medical jargon).
Anxiety and Depression in Epilepsy
Anxiety and depression are more common in people with epilepsy than in the general population – especially among young adults. In fact, roughly one in three people with epilepsy experiences some form of anxiety or depression, about twice the risk faced by those without epilepsy. Why does epilepsy often go hand-in-hand with these mood challenges? There isn’t one simple answer, but experts point to several factors. Living with uncertainty is a big one – epilepsy can make you feel like the rug can be pulled out from under you at any time. The unpredictable nature of seizures (Will one happen today? What if it happens in public?) can create constant worry and fear. There’s also the emotional aftermath of seizures themselves; some seizures can affect parts of the brain that regulate mood, leading to lingering anxiety or depression afterwards. On top of that, many people with epilepsy grapple with social stigma or isolation – you might feel others don’t understand what you’re going through, which can be really lonely. Even the medications used to control seizures can play a role, as some anti-seizure drugs have side effects that impact mood and anxiety levels. All these factors can combine to create a perfect storm for mental health struggles. The important thing to know is that these feelings are not a personal failing and not something you “just have to live with.” They are a recognized part of epilepsy for many, and help is available. Research shows that addressing mental health is critical – people with uncontrolled depression or anxiety often have a worse time managing epilepsy too. In other words, treating your mood isn’t just about feeling better emotionally; it can also help you stay on top of your seizures and overall health. Practical Tip: Don’t hesitate to talk to your neurologist about anxiety or sadness. They’ve heard it before and can be a bridge to resources. For example, they might connect you with a mental health professional or suggest a seizure action plan. Having a concrete plan for what to do if a seizure strikes (who to call, how to stay safe) can give you back a sense of control and reduce anxiety in daily life. Even keeping a simple journal of your moods, stress levels, and seizures might reveal patterns – maybe your bad days follow poor sleep or extra stress – that you can address proactively.
Finding a Therapist
Seeking therapy can be intimidating for anyone, and perhaps even more so when you have a chronic condition like epilepsy. You might wonder: “I already see a neurologist regularly – do I really need another doctor?” or “Will a therapist get what it’s like to live with epilepsy?” It’s normal to feel hesitant. Many young adults feel frustrated at the idea of explaining seizures to yet another person, or worry that a therapist might misinterpret neurological symptoms as psychological. You might even feel a bit of stigma, as if going to therapy means you’re “weak” or “can’t handle it on your own.” But let’s bust that myth right now: reaching out for help is a sign of strength, not weakness. Just as you wouldn’t hesitate to treat the physical aspects of epilepsy, there’s no shame in treating the emotional aspects too. When looking for a therapist, finding someone who understands chronic illness (ideally epilepsy itself) can make a big difference. This doesn’t necessarily mean they need a PhD in neurology; it means they are open, empathetic, and knowledgeable about the impact a long-term medical condition can have on your life. Therapists who specialize in chronic health conditions or disability are out there – and they often work hand-in-hand with medical doctors to support patients. For example, a therapist experienced with chronic illness might help you develop coping skills to regain a sense of control and confidence in managing your condition. This can translate into practical steps: figuring out how to balance rest and work, how to talk to friends or employers about your epilepsy, or how to challenge the negative thoughts that sometimes creep in. The right therapist will understand that your seizures aren’t “all in your head” while still helping you untangle the very real emotions that come with them. How do you find such a person? One strategy is to ask your healthcare team. Neurologists today recognize how vital mental health is in epilepsy care, and many neurology clinics either have a psychologist on staff or can refer you to someone knowledgeable. Don’t be shy about telling your doctor you’re feeling anxious or down – they can often recommend therapists or support services. Another strategy is to use online therapist directories. For example, the Psychology Today website allows you to filter providers by specialty – you can search specifically for therapists who list “chronic illness” or even “epilepsy” as areas of expertise. Reading profiles and reviews can give you a sense of who might be a good fit. It’s okay to “shop around” a bit; many therapists offer a brief introductory call. During that first chat, you can ask if they have experience with clients who have medical conditions or epilepsy. What you want is someone who says, “I may not be an epilepsy expert, but I’m willing to learn and I understand the toll a health condition can take on your mental well-being.” Practical Tip: If therapy feels like too big a leap right now, consider starting with a supportive counseling hotline or a short-term therapy group (some epilepsy organizations or universities offer these). This can ease you into talking about your feelings. Also, remember therapy is your time – if something isn’t working (like a therapist’s approach), it’s okay to discuss it or even switch to someone else. The goal is to find a person you trust, who makes you feel heard, and when you do, it can be a game-changer. Many people say things like, “My therapist doesn’t just listen – she gives me tools. After a few sessions, I started feeling like epilepsy is just one part of me, not the whole story.” That’s the kind of positive change the right therapy support can bring.
Support Groups and Peer Support
Sometimes the best comfort is knowing you’re not the only one. There’s huge value in talking to someone who just “gets it” – someone who’s also had a seizure at the worst possible time, or felt the sting of a hurtful comment, or had to make a tough choice because of epilepsy. That’s where peer support comes in. Support groups (whether in-person or online) let you connect with fellow young adults who are walking a similar path, so you can swap stories, vent, laugh at the absurd moments, and share practical tips from lived experience. Simply put, it can be a relief to speak with people who don’t need a whole explanation to understand what you’re going through. Our nonprofit, Young Adults with Epilepsy (YAWE), offers free weekly peer support groups designed exactly for this purpose. As our program description says, these are one-hour virtual hangouts to “laugh, cry, listen, or just simply connect with people who ‘get it.’” They provide a safe space to share experiences with others living with epilepsy. The groups meet via Zoom in the evenings (with multiple days available), so you can join from anywhere. Each session is facilitated by a trained young adult who has epilepsy themselves – we’re all peers here. You can come just as you are: camera on or off, talking a lot or staying quiet and simply listening. There’s zero pressure to share until you feel ready. (And yes, lurking quietly to soak it in is 100% okay!). The important thing is showing up and knowing that this community has your back. We even have a facilitator who leads a session in Spanish, to make sure support is accessible to those more comfortable en español. Beyond our own groups, there are many other support networks you can tap into. The Epilepsy Foundation, for example, hosts virtual and in-person support groups through its local chapters across the U.S. You can search their website for groups in your area or attend nationwide online meetups. Epilepsy Alliance America is another organization that lists support groups in several states. You might also find comfort in forums or support communities like MyEpilepsyTeam or Facebook groups – just be sure to stick to reputable groups where misinformation is monitored. Why bother with a support group? Because talking with peers can actually improve your well- being. One study noted that group support for people with chronic illness can lead to better coping and even improved quality of life. It makes sense: when you feel understood and supported, the weight of epilepsy feels a little lighter. You might pick up a handy tip about medication routines, or learn how someone else navigated dating or work issues. Or you might simply feel a sense of relief: “Finally, people who understand that when I say I’m exhausted, it’s not just being tired.” That validation is powerful. Practical Tip: Give a support group a try at least a couple of times. The first session might feel awkward – totally normal! It gets easier as faces become familiar. If you’re nervous, you can start by listening in. Maybe set a small goal like, “I’ll share one thing about my week,” or even use the chat feature if speaking up is hard. Also, feel free to sample different groups until you find the right vibe. Some are more informational, others more emotional. Finding the peer community where you feel “I belong here” is worth the effort. Remember, the goal is to remind yourself that you are part of a community and you truly don’t have to handle everything alone.
Mindfulness and Stress Reduction
Stress is a well-known seizure trigger for many people. You might have noticed that your seizures often come at the worst possible times – during finals week, after a break-up, or amid money troubles. It’s not a coincidence. There’s a real mind-body connection at play: when we’re stressed or anxious, our body releases stress hormones and our brain’s electrical activity can change in ways that make seizures more likely. One young man with epilepsy shared that every time he overloaded his schedule and slept poorly, he’d end up having a seizure. Once he recognized the pattern, it became clear that managing stress wasn’t just good for his sanity – it was essential for keeping his epilepsy in check. So, how can we deal with stress in a healthy way? Mindfulness is one tool that has gained a lot of attention. Mindfulness just means bringing gentle, non-judgmental awareness to the present moment. In practice, it can be things like meditation, deep breathing exercises, yoga, or even mindful walking. The goal is to calm the whirlwind of worry in your head and relax the tension in your body. For someone with epilepsy, this matters because it can potentially short-circuit the stress-seizure cycle. In fact, experts (including the International League Against Epilepsy) recommend mindfulness meditation and relaxation techniques as helpful additions to epilepsy treatment. They’re not a cure-all, but they are proven ways to reduce stress – and less stress can mean fewer triggers for seizures. Research is starting to back this up in concrete ways. In one study, people with difficult-to- control epilepsy learned a simple relaxation routine (deep breathing and progressive muscle relaxation) and saw a significant drop in their seizure frequency compared to before. The reduction was notable – seizures went down by about 25–30% on average in those practicing these techniques. What’s more, participants reported feeling less stressed and more in control. Other studies have found that mindfulness training can improve mood and quality of life for people with epilepsy, even if seizure frequency doesn’t change dramatically. The takeaway? Your mental calm can positively affect your physical health. Now, mindfulness doesn’t have to mean sitting cross-legged on a mountaintop or doing an hour of yoga (unless you’re into that!). You can start very small. For example, try this mini-exercise: Sit comfortably, close your eyes, and take a slow breath in for a count of 4… hold for 4… exhale for 4… repeat this for just one or two minutes. That’s it. This kind of deep breathing sends a signal to your nervous system that it’s okay to relax. Another technique is progressive muscle relaxation: gently tense one muscle group at a time (like your shoulders) for a few seconds, then release. Move through your body – it helps release physical tension and can quiet a racing mind. Many people also find guided meditation apps or videos helpful (there are countless free ones online). Even mindfulness coloring books or journaling can be calming for some – anything that focuses your attention gently on the here-and-now, rather than the “what ifs.” Practical Tip: Make stress reduction a routine, not just an emergency button. Consistency is key. Maybe you start or end your day with a short relaxation exercise. You can use a smartphone app like Headspace or Calm for 5-minute meditation sessions. If you’re not into meditation, consider simply taking a slow walk without your phone, or unwinding with music while focusing on your breath. Find what relaxes you. Over time, these small daily habits build resilience. Then, when life does throw a curveball (an upcoming MRI, a major life change, etc.), you’ll have some mental tools ready to help keep your stress in check. Your brain – and your seizure threshold – will thank you for it!
Conclusion
Epilepsy may be a part of your life, but it does not define your life. Whether you’ve been recently diagnosed or living with it for years, remember that every challenge you face – from anxiety about the future, to finding the right words to explain your condition, to juggling medications and mood swings – is something you don’t have to face alone. There is a whole community of people, resources, and professionals ready to support you. Hope is very real in the epilepsy journey. Treatments are continually improving, and many people find stability. But beyond medical treatment, hope also comes from finding inner strength and support networks. It might come the day you realize you’ve gone a month without a panic attack, or when you speak up about your epilepsy to a friend and they respond with kindness, or when you mentor someone else because you’ve gained so much wisdom. Each small victory – attending that first support group, scheduling a therapy appointment, trying a meditation – is a step toward a fuller, freer life. You are a resilient, capable individual. Epilepsy is just one of the many things that make you uniquely you, and with the right tools and support in your toolbox, you can absolutely thrive. Keep learning, keep reaching out, and keep believing in yourself. You’ve got this.
Sources
● Centers for Disease Control and Prevention (CDC)
● International League Against Epilepsy (ILAE)
● American Psychological Association (APA)
● Mental Health America (MHA)