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Guilt

Wed, 05/06/2020 - 02:05
I've had epilepsy for 23 years and I STILL struggle with guilt. My family and friends are beyond amazing with working around my limitations even something as simple as me being the one to pick out my seat when we go to a resturaunt so I don't have to have any triggers in view. I truly appreciate it but I still somehow feel like a burden in a way. How do I get past those feeling this far into having it? I'm hoping someone has tips on how to rid my brain of these feelings! Thank you in advance

Comments

Hi,Thank you for posting, it

Submitted by Anonymous on Wed, 2020-05-06 - 09:51
Hi,Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health  . One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates, to find support groups, events, and programs in your community. Additionally, you may want to consider participating in treatment, seizure and lifestyle management programs, that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . It’s important that you’re continuing to follow-up with your healthcare team and that you’re able to be open and about how you are feeling and how this is affecting your health and daily life. It may be helpful to keep a journal or a diary, to help organize your health issues and document how you are feeling, which can be shared with members of your healthcare team. They can help identify or recognize any patterns, allowing you to modify, (if needed) your treatment plan, behavior, or lifestyle appropriately. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline 

I completely empathize

Submitted by JwB on Thu, 2020-05-07 - 02:03
I completely empathize because I've had struggled same feelings with my Epilepsy (also around 23 years, I'm 29 btw)- the good news is you can overcome it. The bad news, is it's an uncomfortable process. The guilt [and embarrassment] is stemming from an insecurity that has developed because of your condition. You don't want your limitations to define who you are, especially socially to your peers. You don't want to be seen as 'special needs' tag-along at restaurants. You are also sensitive and compassionate enough to know that your condition may come across as burdensome. Being perceptive is a good thing, but those thoughts aren't Remember, your guilt is YOUR psychological state, not necessarily your family or friends. They may or may not see you like your mind is telling  you. Often we are our own psychological worst enemy. "How do  I get past those feelings this far into having it?"Instead of getting past them, you must accept them. Acknowledge and accept. Acknowledge that you feel guilty/embarrassed and accept that they are happening to you right now. Accept that your mind may be in the wrong, and its OK to be in the wrong. you must live in the truth of the situation - that they are real and maybe rational thoughts....Once you are living in acceptance, you need to cultivate hobbies/skills you find you are passionate about, ones that don't depend on Epilepsy disrupting too much. It might be Computers/technology, outdoors, embroidery, philosophical stuff, it doesn't matter - just choose something that you want to become good at. Try to master it and get lost in it....so the next time those stupid insecurities start flaring up, you can be confident that you are NOT useless or defined by your conditions. Instead, you are have a valuable skill that can not only help you, but help others. Be confident in it and don't live in fear. much love,Jwb

I wish I had an answer for

Submitted by broesti on Tue, 2020-05-19 - 22:20
I wish I had an answer for you. I continue to struggle with guilt and the feelings that, because of me, my family does not have the lifestyle they were accustomed to having. In 2009 I was diagnosed with epilepsy (complex partial) stemming from a tumor on my right temporal lobe.  After a year of meds & combinations, it was determined that my seizures were intractable (med resistant). So in Nov of 2010, I had surgery to remove the tumor.  Seizures stopped, but things were not just the same. I could not perform my job at the same level.  I took a new job, relocated my family, and ended up losing that job because I could not perform at the high level needed. I found another job and relocated my family again. 6 months into that job, things started to get hazy. After 5 years, auras started again. Slowly, the intensity & frequency of the auras increased. This significantly impacted my ability to perform at work. I ended up losing that job and it wasn't long before my son saw me having a seizure. This was the first time he had seen me seize. It terrified him. I was back to having multiple seizures a day, some days 10 or more. Back to the doctor I went. Immediately, they scheduled me for another surgery. In the 2nd surgery (May 2016), the doctors removed my right temporal lobe, hippocampus, and amygdala. I have been out of work since that surgery.  It has been 4 years since that surgery, and to my knowledge, I have been seizure free. Though that is positive news, the damage to my family has been done, and I cannot escape the burden and stress I have caused my family.  I know that I did not choose epilepsy, but I know that it is BECAUSE of me that my family's life has been turned upside down many times over. I struggle constantly with guilt and carry this burden every time I look into my children's eyes.

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