3) Acceptance & Adjustment of Epilepsy

Samman Association has been organizing E-talks with esteemed Neuropsychologist Dr. Urvashi Shah. With her her help we shall address the issue of Acceptance and Adjusting our life with Epilepsy.
Below is the synopsis for the same.

1) Acceptance & Adjustment

Acceptance means,’The act of accepting with approval; favorable reception.’ It is not to be confused with compulsion and coercion. The former gives varieties of choices and options whereas the latter leaves with self-doubt and lack of alternatives.

Acceptance in general would mean when we consciously fully accept ourselves and take responsibility for ourselves as who we are. When such an acceptance comes from within oneself and not forced by an external force, it might be called as an honest acceptance. And when one realizes that epilepsy or any illness is not really a choice but its acceptance is, life becomes smooth to live with.

But this acceptance is in our own hands and actions.

2) Acceptance by Self & Others

When we bring acceptance for epilepsy in our lives, this acceptance is inside ourselves and by others i.e. society, community and culture. Note that these two (self and others) are very different. One is internal which can be controlled while the other is external which is beyond anyone’s control. Thus, it becomes very crucial that one accepts oneself fully without any outside influence.

And acceptance by others also brings attention to stigma and disclosure for the same. Stigma means,’ A symbol of disgrace or infamy’, usually a stigma creates a divided wall between people and this wall can be broken down by those same people using education and awareness. These stigmas occur only due to the fact that there was lack of information and misleading presumptions amongst people from the beginning. But as we have discussed before, that as more and more intense research is taking place within the communities, this wall is involuntarily dissolving.

2.1) Acceptance by Self

Whenever we face a sudden change in life, it becomes hard to let the change happen instantly in life. We tend to reject the change in the start, for e.g. The COVID-19 calamity in the lives of people has brought a drastic change and stigma amongst people. It has single handedly changed the way the society used to function. Many people have changed the way they used to live. In certain countries many have started using bicycles instead of cars to follow the guidelines. Many have started working from their homes and decided that it really helped them to save costs. But this sudden change among people for their livelihoods and health was not easily accepted.

Similarly when one gets diagnosed with epilepsy, it is not accepted by the person and the family members affected easily. In psychology, it is stated that there are 5 stages of emotional development which take place after a life changing event occurs in person’s life.

They are further divided into:

a) Denial: All together rejecting such an event from ever happening.

E.g. Such a diagnosis is not mine or perhaps the doctor is wrong.

b) Anger: Aggressive behavior, powerful rage and the constant self-questioning of Why Me?

Usually the answer for such question is not answerable since many people in the course of their life go through different and all kinds of trouble. But everyone has these problems whether epilepsy, diabetes, low blood pressure and no one is alone who doesn’t have such problems whether health or any other. So understanding the fact that you are not alone is significant.

c) Helplessness/Regret: Self-pity, regrets, self-victimization and indulging in choices of what ifs! / Only if!

d) Depression/Anxiety: Sense of loss of control over life, extreme overthinking and constantly questioning the motive.

e) Acceptance: Accepting oneself fully as a person and human being. This stage is the final and crucial one in order to lead a better life. Many people often struggle with the first four stages and juggle around in the same old behavioral struggle, life may not get better perhaps God forbid even epilepsy would not, but running in between stages may ruin the rest of your life.

I personally struggled with these stages even before I knew about them but eventually at some point of my life I had to accept my condition and live with it, thrive in it and become a better human being. I simply accepted it in a positive manner and started on an adventure to live a prosperous life. I realized that it was a major event which took place in the past but I cannot let it take a chief place in my life. I often reflect back on my struggle with acceptance and always think if I had accepted myself sooner I would have started my adventure earlier. But, I think it is better late than never.

I am who I am, you are who you are and it is just a little space in me which has epilepsy. But the other parts of me are way greater than this little space.

                                                     “I may have epilepsy but epilepsy cannot have me.”

2.2) Honest Acceptance.

Accepting the ‘New Normal’ after things have changed. A new way of living life. A positive acceptance and moving on with daily life.

“Why it’s best to accept an epilepsy diagnosis? Acceptance leads to focus on the new normal.”

Research shows that acceptance of diagnosis and change in life leads to best outcomes.

When I personally accepted the fact that epilepsy had become a part of me, I felt good after a few months. Medicines had become a new tablets which I could take with my shakes and workout. Even at present, I think of them not as AEDs but some vitamins and energy capsules for me. I was able to deal with emotions much better and understand what was happening to me (i.e. side effects)

So for a good reason when one accepts epilepsy, everything good or bad and moves on with life, it also benefits with better epilepsy control.

2.3) Understanding Honest Acceptance

When I say, I accepted epilepsy and moved on with it, it not only means motivating myself psychologically and getting all psyched up about it. I also took good care of myself, started from ground zero and moved ahead.

Here are some of the ways in which one can practice honest acceptance instead of preaching it.

a) Proper attention of health and body.

b) Taking responsibility for well-being and epilepsy.

c) Following guidelines given by doctors (Timely medicines, yoga, better lifestyle etc.)

3) Reality Check

Based on True Events

A 10 year old young girl went for her visitation to the doctor after her diagnosis with epilepsy along with her mother. After the diagnosis and hearing each and every instruction the girl understood that she had epilepsy. Her doctor suggested to arrange a meeting with Dr. Shah to discuss the treatment in detail as the mother was crying and very upset about the diagnosis and could not bear the tension.

One day they both visited Dr. Shah and before the little girl’s mother could utter a word she asked Dr. Shah, ‘I have something because of which I can fall and hurt myself. My mother had asked me not to tell anyone anything about it. But on the very next day I told everyone in my class about me.’ Her mother was astounded, she replied ‘What? What did you do?’ To which the girl replied, ‘Yes, I asked my teacher to speak in front of everyone and informed them that my doctor has said that I have something due to which I might fall and hurt myself. So I am informing everyone that if I fall, I will beat everyone because you have to hold me before I fall’ It is your responsibility, if I forget my medicines you have to remind me and if I fall, you all have to help me.’ Since her mother did not know about this declaration in the class, she (girl) later informed that she has become quite popular in the class and everyone follows her just in case she ever falls. She looked at her mother and said, ’So it was a good thing, why hide it?’

Here, she took responsibility of herself and accepted her epilepsy. She took her medicines on time and took care of herself.

4) Family Support and Embracing the New Normal

When a new diagnosis takes place, it is a very crucial stage for the family members to remain calm and persistent. Family members should not get worried and cry over it.

For instance, the girl (above) was brave enough to take care of her mother and support her well enough.

Regardless of the diagnosis, the family must remain strong and tight to the person affected. It is must that they understand what the nature of epilepsy is and what causes it. They must try and educate themselves.

Change it with a positive attitude, they must be participative in the beginning when such change is welcomed. Try not to overprotect the person and indulge in hiding it. Embrace the illness and welcome it with open hands.

5) Counselling

If there is any problem or any other issue which one is not able to address openly. Try going for counselling and inform them about so and so. Counseling is very helpful to seek information about self and the problem. It helps in trying new strategies and clearing doubts. It also helps if one is dealing with the side effects or depression, anxiety related problems.

One should not be ashamed of seeking counselling. It is often thought of as a weakness in our society but one must understand that there is no shame in asking for help. Counselling can really make a huge difference in person’s life and their family members (I can personally attest to that). Seeking help from support group members which leads to a healthy and happy life is what everyone often want. And counseling is sought to help then, why should one step back. Remember the girl who told Dr. Shah and discussed everything with mother in front of her. Her mother might have put to ease after that session and her daughter’s openness. It might have even strengthen their relationship and bond.

Always seek help when you really need it. Keep asking questions and clear the doubts, be it by a doctor or a counselor. Always be active in finding solutions to problems and keep working on them without exerting yourself.

6) Being Comfortable with ‘My’ Epilepsy

In the beginning, everything was clouded and foggy when I was first diagnosed with epilepsy. I was upset, confused, afraid of the negative reactions, stigma, shame, making adjustments in life. But with time, experiences, epilepsy education and support group meetings it became easier to deal and more self-introspective about it.

I started sharing my problems and affairs with closed ones, started practicing new things which would benefit me. Practicing how to tell people in interviews about my condition and how they can contribute to it as well. At some point I even started creating awareness around my circle about it. With a few fraction of mistakes, learnings and time I became positive and open about it. I did not let it alter my self-image. Having a casual attitude about it and letting go of those who hurt me in the past made me more-friendly and relaxed towards others. It gave me more control of my life.

If you are reading this you can try the above listed suggestions. You can start with some counseling and support group meetings to understand about it much better.

7) Acceptance by Others.

Remember in the beginning we mentioned the two types of acceptances. This is the other one, acceptance by others. But first you have to take the initiative to accept yourself before you expect others to accept you. (Search Lessons from Bala on the blog)

One of strangest things about epilepsy is that more than 1% percent of people in the city have epilepsy and yet there are not many people coming forward to talk about it. Yet there are so many people who suffer from so many other diseases and they freely talk about it. Remember it is epilepsy not some bad omen. It is a neurological disorder. Don’t be bothered by stigma, it can be broken by awareness and education.

This stigma is further classified into two classes:

a) Felt and enacted stigma: An experience which is real and felt, an event or many which a person has actually faced.

b) Perceived stigma: An experience which is not real but imaginary and based on fear. These stigmas are faced by majority of people who are under the dilemma of if’s, would be’s and other preconceived notions.

It is often due to this stigma that many people live in a poor way and become the prisoners of their own mind. It is this stigma which later haunts them throughout their lives and affects their daily life. This stigma must first be identified, tackled and dealt with. One can seek the help of an experienced person with epilepsy or a counselor or any other professional.

8) Awareness vs. Education

Awareness is about disclosure of one’s epilepsy, the act of revealing it to others and not making a fuss about it.

E.g. let’s talk about it openly.

Education is about studying the nature of epilepsy, exploring more knowledge through seminars, sessions, public talks and media.

E.g. like this blog and other material.

Also Dr. Urvashi will be talking about Adjustment at the next session. Anybody would like to join, s/he should email us at sammanassociation@gmail.com

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