Even when I'm completely healthy, I'm always racing to complete the mounting daily tasks. I can't imagine how much more challenging these tasks are when dealing with a disability myself or while caring for a loved with a disability.
November marked National Epilepsy Awareness month, and HealthyWomen.org created the "Women Succeeding with Epilepsy" video series, sponsored by UCB, Inc., to educate and inspire women dealing with the challenges of living or caring for someone with epilepsy. In the series, one woman, Amy W., tells the story of caring for her son with epilepsy while another woman, Veronica C., shares her experience of living with epilepsy since she was a teenager. To watch the videos visit: http://www.healthywomen.org/content/article/women-succeeding-epilepsy-part2.
My grandmother lived with epilepsy all her life and it partly defined her. She left school early because of her epilepsy, she couldn't get a job because of her epilepsy and, even though she was a wonderful, competent and talented woman, she was tremendously shy because of her epilepsy.
I wish I'd been more educated and thus more aware of the ways in which I could have helped her deal with her epilepsy and so, in memory of my grandmother who endured an illness that challenged her throughout her life, I'd like to write about the following tips from HealthyWomen for supporting someone who lives with epilepsy.
10 Tips For Supporting Someone With Epilepsy
- Communication is key. Nurture an environment of openness. It’s important to have a candid dialogue about your child’s condition, so they feel comfortable coming to you with any feelings or concerns. Talking about what it means for them is important, as is talking to others about what it means for you. Also, letting neighbors, coaches, teachers, school officials and other important people know is key to fostering a team approach.
- Make informed decisions. Start by choosing the right health careprofessional. Give your child the best possible chance for success by seeking care from a specialist who is familiar with epilepsy, such as a neurologist or epileptologist. Do your research and ask lots of questions. If you don’t feel comfortable from the beginning, keep looking.
- Guide your child toward activities where success is most likely. It’s easy to see your child’s strengths. Encourage them to participate in activities where their skills will be best utilized. For example, partaking in an individual sport rather than a team one may offer significant benefits. Also, by giving your child responsibilities and allowing him or her to make or contribute to important decisions, you’ll be empowering your youngster to be his or her own advocate one day.
- Remember: To care for someone else, you need to take care of yourself first. You know when you’re on an airplane and they say to secure your oxygen mask first? Same idea here—you can’t help your family if you aren’t taking care of yourself. Make sure to schedule some time for self‐care, relaxation and nurturing other important relationships in your life. Also, it helps to have a support network of other parents caring for children with epilepsy. You can find resources for this at epilepsyadvocate.com.
- Always be prepared. Create an action plan so that you’re ready if a seizure occurs. That includes always carrying important phone numbers and any necessary medications.
Supporting another adult: Do you have a friend, coworker, spouse, parent or sibling living with epilepsy? Maybe you want to be supportive but aren’t sure how. These tips can help:
- Talk openly. By normalizing conversation about epilepsy and seizures, your friend or loved one will feel more comfortable talking about their concerns and fears. Also, don’t be afraid to express your own feelings as well. Witnessing a seizure can be scary—if it happens to you, talk about it.
- Do your homework. Learn what you can do in the event of a seizure by asking a medical professional, doing research and talking to the person who has epilepsy. Visit www.epilepsyfoundation.org/about/firstaid to read their tips on first aid for seizures. Also, it helps to understand terminology and to know what resources and support options are available.
- Be a cheerleader and advocate. Stay optimistic and celebrate seizure control and important milestones. Educate those around you and encourage them to get involved with epilepsy awareness.
- Offer to go to important medical appointments. Your friend or loved one may want some extra support or someone to take notes about medical procedures or other important topics. This will also allow you to be a solid sounding board for confusing medical decisions. In addition, people with epilepsy may not recall what happens during a seizure, so caregivers should try to communicate that information to the physician.
- Carry important phone numbers with you. Whether it’s for specific doctors, local hospitals or other loved ones, always be able to contact the people who you may need or want informed of any given situation.