7 Things Not to Feel Guilty About Living with Epilepsy
Becoming diagnosed with epilepsy is a life-altering event. Epilepsy does not care about your age, or the time within your life. This condition can happen to anyone. Some are introduced to epilepsy at a young age. Some are blindsided at an older age. When diagnosed with epilepsy it is important to not allow yourself to succumb to guilt. It is important to not turn against ourselves and become self-critical and self-hating. Guilt is equivalent to punishment. It’s an easy path to travel that many of us have taken several times. However, the path that puts us to the challenge is the one that motivates us to overcome.
We must recognize and avoid things that cause us to feel guilty as we live with epilepsy. What are these things?
AVOID FEELING GUILTY FOR ASKING FOR HELP
As someone who has always been content doing things on my own and being independent, asking for help following my diagnosis was a struggle. Sacrifices and compromises were a necessity to prevent seizures.
What are some things that I sometimes need a helping hand with:
- Going to the store
- Attending a doctor’s appointment
- Picking up my prescription(s)
- Someone staying nearby and checking on me if I would like to take a relaxing bubble bath
- Preparing meals (Should I be holding a sharp utensil and a seizure occurs)
- Protecting me through a seizure
It’s important to remember that those of us who live with a chronic illness have limitations and could use a helping hand from time-to-time. Asking for help is never a sign of weakness. It is one of the most courageous things you can do. And it may very well save your life.
AVOID FEELING GUILTY FOR NEEDING TO CANCEL PLANS
When I say that I’m going to do something, I do my best to follow through. When scheduling an appointment or event at a designated time, I do my best to arrive on time if not at least five minutes earlier. Punctuality has always been a priority to me. When I became diagnosed with epilepsy, it was my health that traded places with punctuality.
I would always feel a heavy weight of guilt having to back out of something that I had agreed to participate in with friends such as a fun get-together. I feared that others would consider it a matter of me making excuses and that they would eventually “walk away”.
Some days, I’m fine and dandy. My seizures have given me a break. Other days, my brain and entire being feel off. Plagued by small seizures back-to-back. My energy drained like a phone that needs plugged in and charged. Apprehensive if I might have a large seizure. It just felt safer to stay home.
No one wants to blow off a family member, friend or important appointment but sometimes when living with a chronic illness, health takes seniority above all else. This needs to be recognized, understood and accepted. We should not be made to feel guilty. Especially by ourselves.
AVOID FEELING GUILTY FOR TAKING A REST/LAZY DAY
There are days that I’ve just recovered from a large seizure or am being harassed by smaller seizures back-to-back. There are days when I need to disconnect from all forms of social media and connect with life again. Do things that I enjoy outside of the electronic universe.
The amount of guilt and pressure that I shoulder at times can be overwhelming. The social media train moves at light speed. Taking a break can mean putting in maximum effort to get back on.
As an advocate, I invest every ounce of effort, love and care into what it is that I do because I’m passionate about what it is that I do but I have to remember that I have a responsibility to my husband and household too.
There are times I do struggle with guilt that I’m not doing enough in my advocacy and for the community, wanting to do more, limited to what I’m able to do, but I constantly remind myself and am reminded by my loving husband and dear friends that I needn’t worry or feel guilty for taking rest/lazy days so that I can avoid burnout and assure the capability to give only the very best of myself.
Never feel guilty or allow anyone to cause you to feel guilty for taking time for yourself. You are doing the best that you can. Solidify your accomplishments. Your goals and empowering impacts. Embrace the pace of your own journey. Don’t feel pressured to catch up or take a break. Don’t feel guilty if you haven’t responded to a text or made a post on social media. Be you. Do you. For you. The world will adjust.
AVOID FEELING GUILTY FOR DOING SOMETHING FUN
What a relief it is when my seizures decide to cut me some slack. When they take a vacation, it’s like a vacation for me. Even if only for a day. I’ve forgotten what normality feels like as I’ve lived with epilepsy for over a decade now. Having a break is like a bird being let out of a cage to take flight. Keeping in mind of what triggers my seizures, I enjoy doing things that I typically wouldn’t be able to do because of my epilepsy. On my 9th wedding anniversary, my seizures decided to give me the gift of freedom. What an unforgettable experience it was. Bicycle riding, driving a golf cart after having not driven since my car accident which led to my diagnosis, being taken jet skiing and most fun of all…parasailing!
My heart will cherish this forever. It was the greatest feeling of freedom I believe I’d ever felt since my diagnosis.
As overjoyed as I was, I knew that I could not be naive and remember that my seizures could come back whenever they please. I appreciated the pause to collect precious memories.
However, this did not come without criticism from some who believed that if I were able to partake in such activities, my condition mustn’t be as severe as I claimed it to be. Was I being overdramatic? Shouldn’t someone like me be bedridden?
Living with a chronic illness does not make a person exempt from living a fulfilling and purposeful life. Their rights and freedoms are not automatically stripped away upon diagnosis. They do not need to act or appear a certain way to validate their condition to anyone.
Never ever feel guilty for doing something that you enjoy if you are having a flare-free, seizure-free day, keeping in mind triggers and anything that could put you in harm’s way. If you have any uncertainties, always contact your doctor ahead of time.
AVOID FEELING GUILTY FOR EXPRESSING EMOTION
For the first few years following my diagnosis, I suppressed my emotions around family and friends. In my mind, I was sparing them from the Debbie Downer in the room. Emotionally, I was just a leaf floating on air. Walking aimlessly with a shattered heart and no ambition to look for silver linings and greener grass.
Deep down, I longed for someone to help me stand back up on my feet but I didn’t want to burden anyone with the boulder-sized pain that I carried. I didn’t want to break the dam and let the tears pour from my eyes and sob through an entire box of Kleenex.
Bottling up my emotions pained me more than the idea of releasing them. Causing me excess stress and depression. Loneliness and suicidal ideation.
If you’re thinking about suicide, are worried about a friend or loved one, or would like emotional support, help is available.
Call The National Suicide Prevention Lifeline
Available 24/7 (1-800-273-8255)
This is no way to live. It’s tortuous. Emotions are not meant to be locked away like a dirty secret. Emotions are not criminal. Everyone experiences emotions—whether enjoyable or painful, our emotions make us human.
Expressing how you’re feeling doesn’t make you a Debbie Downer, it’s a gained superpower and a reminder that your feelings are valid.
AVOID FEELING GUILTY FOR NOT WORKING
There are times I do struggle with guilt that I’m not doing enough to provide for our household, wanting to do more, limited to what I’m able to do, but I constantly remind myself and am reminded by my loving husband and family that I needn’t worry or feel guilty for being a stay-at-home wife.
I may not have a 9-5 job but being a stay-at-home wife is a job. It’s a job without pay, and sometimes a job without thanks, but it is a job. From dusting to laundry to online grocery shopping, there is always something to be done. Anyone who says it isn’t work has never cleaned kitty hairballs off the floor while making a shopping list and running a load of clothes.
AVOID FEELING GUILTY FOR SAYING “NO”
It took me a long time to get comfortable saying the word “NO” and to let go of the guilt that would tag along with that word.
One of the most valuable lessons I learned in the beginning on my chronic illness journey was that saying “NO” was a form of self care.
We who have a chronic illness have our limitations. Certain things we must set aside for the betterment of our health and wellbeing.
Some days, we just aren’t feeling our best or we’re bouncing back from a seizure or flare up etc.
It is not uncaring or selfish to say “NO”. We should never have a fear of letting other people down, being disliked, criticized, or risking a friendship.
We can’t pour from an empty cup, so we need to make sure that we are filling up ours first.
Write it on your heart that “NO” is not a bad word but is a form of self care.
There is no shame in saying no now so you can say “YES” later.
I felt so connected to your article …..I too am a doctor with refractory epilepsy with so many internal conflicts ……you have covered so much in this article ………I would request you to just check out the beginning of my journey @www.loveyourskull.com
Thanking you in anticipation
Wow how astonishing and inspiring. A doctor with refractory epilepsy. Firstly, let me begin by saying that I’m sorry that you must contend with this form of epilepsy too and also I say inspiring because most certainly your patients must feel so grateful to speak with a doctor who can understand them on a much deeper level. I will gladly take a look at your website. Thanks for sharing with me. All the very best to you!
Hi Carrie! 🙂
You’re just the best! I reflect on that sometimes too. I appreciate that you gave this a read and happy you enjoyed it!
Feeling unpleasant repercussions of having a good time depends on what I’m doing and how hard I push myself. I can have a seizure-free day and thankfully pack in all the fun I want but if I overexhert myself…stay up too late, stay out in the sun too long, don’t stay hydrated etc. I will definitely pay for it later.
Epilepsy is so unpredictable, I can never ever tell if I’m going to have one, two or none at all. Yes! Like you, I take what I can get and do what I can respecting my limitations.
Oh gosh, I am so sorry you have to deal with that! I really want that to change for you and I’m holding onto hope that it will!
I don’t have many opportunities to travel like I would really like to. Where was your favorite place to travel to? I couldn’t imagine that discomfort and my heart goes straight to you. I commend you for your strength and perseverant spirit even so. Your husband and son are two true blessings!
We always have to plan out any trips that we want to take. All medicine, back up medicine, emergency medicine, heat protectant clothing, checking to make sure I won’t be exposed to anything with flashing or flickering lights because that has the potential to cause me seizures….it’s a hefty task but if we want to have a good time, it’s mighty important!
Thank you so much Carrie, I am so happy that we’ve come to know one another and be apart of one anothers lives! You are such a sweet soul and a blessing!
And I the very same!
So much love! xoxo
I can’t believe I’m the first to comment on this post, Tiffany! Yay, me! What an honor. Funny how folks comment on soc med, but they never actually go to the source. It makes me wonder if they actually read what I write!
So I loved this post. I resonated with all of it, but especialyl feeling guilty about having fun. I’m curious. If you get a good day, will you pay for doing something fun later? I very very rarely get even one day, but if I do, I can’t go nuts with activities because the payback is brutal – painful and generally it lands me right back in bed. I’d love to have three days, but that hasn’t happened in 8 years. I can’t even imagine what I’d do with three days and no pain or fatigue to deal with.
How wonderful that you were able to do all those things for your wedding anniversary! My illness has basically stopped us from traveling like we used to. If we go somewhere now, the usual rule is I’ll try and go out and do something seated for a few hours and then I go back to the hotel, so a pool is a must. My husband and son know they are free to do whatever they want and they can do it without feeling guilty, they just need to take lots of photos so I can share with them later.
Keep up the great work, lovely. I’m proud to be your friend!