Community Forum Archive

Family & Friends

Tue, 01/21/2020 - 08:52
Hi everyone, I am fighting a loosing battle and I want to see if anyone can offer me some friendly advice. My sister has epilepsy and was diagnosed when she was 15 years old. She is now 32, married with 3 children and we have fallen out. She will not speak to me or any member of my family about her epilepsy and has been in denial about it since the day she was diagnosed. When she was diagnosed, she refused to take her medication and things just got worse. The doctors were hopeful of the possibility of her growing out of it but because of her denial and lack of self care, she has not grown out of it. Since the day she was diagnosed, my dad and I have always offered support but she refuses to speak to us about her epilepsy and how she is managing it. She has quite significant memory loss and I suspect (because she won't talk to us) is still having fits and absences. Her husband is a good man but my sister rules the house and will not be interfered with. I have watched her have fits, cared for her afterwards and have always done everything I can to help (without swamping her). When she was pregnant she was fitting but fortunately, she has produced 3 very healthy and happy children. I was always very concerned about what advice she sought on pregnancy and epilepsy but we are past that now with her youngest being 3 years old. She has however, in my opinion, made the worst decision (noting her denial of diagnosis) and works nights in a supermarket. This involves starting a shift at maybe 8pm and working right through the night until 5/6am. Because she cannot drive, this also involves a 40 odd minute walk to work (in the dark each way) along a national speed limit road (her husband can't take her because he can't leave the children). She has regular absences with minimal knowledge of them having taken place, has walked in the road in the past, nearly burnt the house down amongst other things over the years. The reason we have fallen out is because I fight against her decision to walk this journey to work and do the night shift. She is so adamant on independence (I can do anything attitude) and will not accept the risks this night work exposes to her life. In the beginning, she would do the night shift and stay awake the following day to take care of her youngest. Her youngest is now in nursery so I believe she may now sleep through the day following a night shift. At the tail end of last year she got hit by a car on her walk to work. The driver said that she simply walked in front of the moving car and my sister cannot recall anything, leaving me to only conclude that maybe she had an absence (although she denies this but she wouldn't know!!). My family and I are of the opinion that she is lucky to be alive but in true denial, she is back on the night shift again. We actually had a falling out before this accident took place but since the accident, she is showing no signs of wanting to be friends again. If I don't express my opinion of her choices, I will only live with regret if anything happens to her however my opinion has now damaged out relationship. I have also read numerous articles on how working a night shift reduces the length of a life without adding epilepsy into the equation. I have no idea what too do now or where to turn to. Is there anyone out there facing similar concerns with a family member or friend that can offer some advice?

Comments

Hi, Thank you for posting. It

Submitted by Anonymous on Wed, 2020-01-22 - 16:29
Hi, Thank you for posting. It sounds like you all have been through a lot and we understand this must be very challenging and know you want what is best for your sister and your family. Communicating openly and honestly with her (if she’s receptive to this) about your concerns is important, which it sounds like you’ve tried to do. It may be helpful for your family just to know that you’re willing to continue and try to help and to be as supportive as possible. It may also be helpful for you to talk with others who may have similar experiences or concerns by contacting your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. Posting in our forums like you’ve done or talking with others via our online chat room are also great resources for finding support as well. https://www.epilepsy.com/connect/chat 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, or contactus@efa.org. epilepsy.com/helpline    

Hello, I’m a licensed

Submitted by Patriotrehab on Sun, 2020-03-08 - 19:32
Hello, I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. Accepting the diagnosis of epilepsy and compliance with treatment is very challenging for many of us and there can be all sorts of reasons that your sister doesn’t accept her diagnosis, but without talking about it with her one-on-one... I couldn’t tell you what why she doesn’t listen to you as the reasons are unique and specific to each person. Your concerns are valid, but reconciliation is not possible without forgiveness. She’s angry with you because she doesn’t believe that you have respected her as an adult capable of making her own decisions even if you disagree with them. People take risks every day that are greater than what we would or do things that we don’t approve of, but because they have freewill...sometimes we have to keep our opinions to ourselves if we want to continue the relationship with the person if they have already told us “they don’t want to hear it”. Otherwise, we have to “let them go” and “wait for their return” with the understanding that they may not for our own self-care. I, too, had to make some difficult decisions with family members that I love, including my own mother and son because of their life choices and I fear for them every day. I also provide psychotherapy and counseling to people who are in similar situations as yours on a regular basis, but it all comes down to the basic principle of healthy boundaries. Right now your sister is rejecting your advice. If you want to keep open communication, then you can try to initiate contact by acknowledging and apologizing for your part which is that you haven’t understood that she had enough of listening to your concerns and that you didn’t respect her right to make her own choices even if you disagreed. You will need to commit to only sharing your concerns with her if she asks for your advice or opinion on a matter. If you decide that you cannot engage in this kind of relationship, then you may need to wait until she returns to you. I wish you the best, whatever you decide.

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.