I remember the very first time that someone spoke the words, "Everything will be okay!" speaking about my epilepsy. Fire engulfed my stomach. When a family member spoke this to me, I knew they meant well, however, I wanted to curl into a ball and cry until I had no strength left in me. The way it looked, it didn't look okay in that very moment.
I didn't hold anything against them. Of course not. They meant well. Men, women and children are being diagnosed with epilepsy in The United States every single day and around the world. Medicines and treatments are being created all the time. Those battling epilepsy doing everything in their power to live as normally and healthy as possible. Meeting with family and friends in social situations.
It's hard to know what to say or how to react to the news that someone you care about has a life-threatening medical condition with compassion. There really is no perfect handbook for this kind of situation, and I have experienced quite a few blunders.
Below, I've put together my list of Things To Never Do or Say When Someone Tells You They Have Epilepsy:
- Don't raise an eyebrow and ask, "Is it contagious?"
Don't all of a sudden stop answering calls and texts. Don't start whispering or lowering your voice to ask any questions you may have about epilepsy. Don't say "That's sad!" and that's it. This does not help. Don't dismiss their epilepsy off as "No big deal." Don't ask if their condition came from something that the person did. Don't say, "I know how you feel." Unless you've been treated for the same type of condition and have undergone exactly the same treatment, you really don't know how the person feels. Don't say, "Just be grateful you don't have (Insert another medical condition)." No matter what medical condition you have, its a life-altering-condition. Epilepsy can in fact be life threatening. You don't need to be reminded that things can always be worse. Comparing medical conditions is not helpful. Don't say nothing. When a friend reaches out it makes the person feel wanted and needed. A lot of people are afraid and don't know what to say, but simply not saying anything can make a person feel isolated and alone. It's better off saying something rather than nothing. Don't treat the person any differently. Treat them just as you've always known them your entire relationship. They will notice a difference. They want to be treated with the same amount of respect, dignity, and compassion. Just because a medical condition has entered the picture doesn't mean an alteration of relationship needs to occur. Don't do more for the the person than they are comfortable having others do. Being treated like child or invalid when they are not can be degrading. Independence is very important to a person.
All the reactions listed above, are ones that I have encountered at least once before. Yes, they have knocked me back a step or two, even hurt me a little, over time though I've grown a thicker skin and even allowed myself to smile and laugh a bit on the inside.
Thankfully, for each of these responses, there is a greater or an even more powerful response! Take a look at my tips for
What To Do When Someone Reveals They Have Epilepsy
- Tell them, "I'm not sure what to say, but I want you to know that I care."
Assure them, "If you would like to talk about it, I'm here." Assure them, "Please let me know if there is anything that I can do to help." Offer interest in understanding what the person is going through. However, understand that the person may not want to talk about it right away. Bring humor into the picture if it appears to be the right moment for it. Humor can change moods and even lighten the load. This can help the person and even the family to connect to things outside of epilepsy. Find a way to bring happiness and joy into that persons life. Offer to help them with things they may need such as running errands, going to the doctor, preparing a meal, picking up prescriptions etc. Be as specific as possible. Try to steer clear of "Call me if you need anything."Allow there to be room for normal non-epilepsy talk in a day. Sometimes a person can feel as though their entire lives are consumed by their condition. When that is the case, it feels great to have distraction. Take notice from the person how much they do and do not want to talk about epilepsy.
Epilepsy fighters, family, and friends are all in the journey together. We who are diagnosed, know that family and friends have the best intentions. Words don't always come out like one might hope when stress, fear, worry, all kinds of emotions are running rampant. However, it is communication that is extremely helpful and that is what matters the most. That the lines of communication always remain open. It's very helpful to be open and to communicate that you would like to be there and you want to do what you can to help.
I encourage epilepsy fighters, family and friends to take a look at both of the lists together and use these lists as a learning opportunity to think about what might be helpful and how this can offer support. It is my hope to make the epilepsy journey a little less stressful and exhausting.