5 Essential Steps After An Epilepsy Diagnosis

I’ve lived with epilepsy for over 15 years, and when I was first diagnosed, I had no idea what to do. I didn’t know anyone else with epilepsy, and it felt pretty overwhelming. If I’d had a guide back then, it would’ve made things so much easier. That’s why I’m sharing these five steps – They’re what I wish I had known from the start.

Acknowledge your  feelings:

An epilepsy diagnosis is a life-changing event that can bring on a multitude of emotions. Feeling angry and sad are normal emotions when receiving news of a long-term illness. I worked my way through many different emotions at first. It took time and effort. What makes the process easier is to have a support system to guide you through such a transformative experience.

Educate yourself:

The more you know about your epilepsy, the better equipped you are to take an active role in your treatment and management. Ask questions and seek answers and do your research. Use reputable websites only.

Websites to research epilepsy:

• The Epilepsy Network (TEN)
• The Epilepsy Foundation of America
• CURE Epilepsy

There is no such thing as a dumb question. Seeking answers is a vital part of our effort to learn more about epilepsy and doing our research is a prime example of taking our health into our own hands.

Build your healthcare team:

Having a good healthcare team is important in order to receive quality care and attention.

• Primary Care Physician (PCP):
  Your primary care physician can help coordinate your overall health and refer you to specialists.
• Specialist:
  A neurologist, particularly one who specializes in epilepsy (epileptologist), is crucial for managing epilepsy.
• Pharmacist:
  Build a relationship with your pharmacist to manage prescriptions and understand potential side effects and interactions.
• Resource connection:
  A social worker can help connect you to resources, support groups, and financial assistance programs.

Find support through community:

Support groups are a great way of connecting with other people who have experiences with epilepsy. Social media platforms such as Facebook and Instagram have excellent support groups that can be a safe space to talk about what you’re going through and get valuable coping tips and resources.

Practice self-care:

By practicing self-care, you’ll be better equipped to navigate the challenges of epilepsy.

Here are a few self-care activities:

• Designate a sleep schedule (And stick to it)
• Step away from stressful situations
• Give yourself ‘Me Time”
• Follow a nutritious and balanced diet
• Practice relaxation techniques
• Engage in moderate and regular physical activities (Walking, cycling, or dancing)

Conclusion:

Getting an epilepsy diagnosis can be overwhelming, but remember, you’re not alone in this journey. By following these steps, you’re taking control and setting yourself up for the best possible care and support.

Stay proactive, connect with others who understand, and keep exploring ways to manage your condition.

What is a positive and productive step that you would recommend to someone newly diagnosed with epilepsy?