Epilepsy and negative Relationships

[KitKatKatyMacs]

Hi. I'm new here and have a Situational question. I am a person of faith and attend church regularly. I am Also involved in our children's ministry and community outreach program. It has taken a long tome to get my seizures under control and I worked hard! I experience simple and complex partial seizures mostly as truly of a TBI.
My concern is this...there are a few certain people that are disapproving of my taking meds for E. They expect me to be healed in Jesus' name in an instant. They believe an outdated doctrine that states if a person isn't healed; they are not Believing enough for healing/lacking faith. The whole church isn't this way, just a few influential Members in positions of authority. Their attitude towards me is negative and rude. At times they have accused me of just trying to get attention or just being crazy.
I have limited my interaction with those people; given them Literature from the epilepsy foundation, showed them Bible verses that negate their doctrinal beliefs and ultimately ignore them. I feel such pressure to
Be healed feel as though I am failing because my seizure activity has increased significantly in the past 6months (high stress, diagnosed w/Hashimoto's thyroiditis, disability review).
What are some ways to effectively handle negative people like this? What do I do when my faith is attacked? Is this as big a deal As it feels to me? I am changing churches and don't want a repeat. I want people to see ME, not my disease.

 

[Jumpwhat]

I can definitely relate. My family reacts in a very similar way. Others might have more helpful advice, but I have found that you have to pick your battles. In your case, you attempted to educate them on E and they have chosen to ignore the information you provided them. You have done everything you can and it is up to them to take the next step. In my situation, I eventually just stopped bring it up around my family. It just isn't a battle that I feel is worth fighting around them. Yes, it is hard because I would love their support (exactly like you and these church members!!!) but I can't put myself in those negative places all the time. Definitely not the ideal solution but I'm hoping some more knowledgable members will chime in with their advice/personal stories! I can only empathize :/

 

[KitKatKatyMacs]

Actually your empathy is reassuring. I'm sorry that your family is not helpful (I don't have a family). It amazes me that someone can see a seizure or the symptoms/aftermath and still be so Insensitive!

 

[Jumpwhat]

I do not understand it either but it seems like an all too common occurrence for people with E :/

 

[Cint]

What are some ways to effectively handle negative people like this? What do I do when my faith is attacked? Is this as big a deal As it feels to me? I am changing churches and don't want a repeat. I want people to see ME, not my disease.

First off, welcome to CWE. I'm sorry that people in your church are attacking your faith just because of you're taking meds for E. How dare they do so? I bet if you were to check, there are many other church members who take meds for various reasons, but don't tell.

After I had a failed brain surgery for my E, people in the church I attended would tell me, "we prayed for you, blah, blah, blah", insinuating that I didn't do what I was prayed for. So I just closed my ears and mind. I know that isn't the answer you're looking for, but that was the way I could handle the negativity of these people.

When your faith is attacked, remind those folks that just because your E is finally under control, you cannot stop taking meds as that could bring the seizures back and you would be back were you started again. Plus abruptly stopping AEDs can cause status, non-stop seizures. Then those church folks would probably attack you for not praying enough. So damned if you do take meds and damned if you don't!

Some people thought that the Apostle Paul in the bible suffered from epilepsy on his way to Damascus, but of course, he didn't have meds available back then.

Just for more info on some biblical and historical figures and epilepsy:

http://www.ncbi.nlm.nih.gov/pubmed/24585826
A retrospective diagnosis of epilepsy in three historical figures: St Paul, Joan of Arc and Socrates.


It has been suggested that undiagnosed epilepsy profoundly influenced the lives of several key figures in history. Historical sources recounting strange voices and visions may in fact have been describing manifestations of epileptic seizures rather than more supernatural phenomena. Well-documented accounts of such experiences exist for three individuals in particular: Socrates, St Paul and Joan of Arc. The great philosopher Socrates described a 'daimonion' that would visit him throughout his life. This daimonion may have represented recurrent simple partial seizures, while the peculiar periods of motionlessness for which Socrates was well known may have been the result of co-existing complex partial seizures. St Paul's religious conversion on the Road to Damascus may have followed a temporal lobe seizure which would account for the lights, voices, blindness and even the religious ecstasy he described. Finally, Joan of Arc gave a detailed narrative on the voices she heard from childhood during her Trial of Condemnation. Her auditory hallucinations appear to follow sudden acoustic stimuli in a way reminiscent of idiopathic partial epilepsy with auditory features. By analysing passages from historical texts, it is possible to argue that Socrates, St Paul and Joan of Arc each had epilepsy.

 

[Fedup]

KitKatKatyMacs

I understand what you are saying, as you know being a person of faith has its challenges irrespective of our beliefs. There are people of semblance in all our lives and because of this we face a new challenge each day, this does not mean that we can change the understanding of others, it means we can only try and because we are human we will fail at times. It makes no difference how influential people are, they do not get to choose or path in life or how we lead it, just because there is one or two bad eggs does not mean you throw out them all. In other words irrespective of the influence you live your life to the fullest and the best you can. The negative dwindles a certain extent but it always lifts its head in some way, as Jumpwhat said it is hard.

Of course it is a big deal but do not give up, there are no good ways of dealing with this type of abuse and we all have our own ways just as you will find yours. You can stand up for yourself and believe in yourself this is one of the ways to stand up for yourself against the negative. Believing in yourself is important and ignoring the negative is often the best way.

 

[masterjen]

No matter what the circumstances (epilepsy, cancer, MS, mental illness, etc. etc.) there are always going to be people out there who feel they know more and are more "expert" than the patient and their doctor. They could feel they themselves know more, or that the patient should be seeing this faith healer, that naturopath, going to this church, or dumping all our medication down the toilet because it is poison because "I never take medication and look how healthy I am". My sister-in-law is very much like this, so I know exactly where you are coming from.

As difficult as it is, the best thing to do is to smile and walk away or if you feel you feel pressured to say something, try something like saying politely: "I appreciate you having my best interests in mind, but my doctor and I are handling things in the way that is safest for me an optimal for my health". That has shut some people up when I have had to say it

 

[msvb19]

question for those people. are they advising diabetics to stop taking their meds
and second question when did they become God? I think God created all kinds of methods for us to be healed. We are lucky to have the chances to find them.

 

[Cint]

question for those people. are they advising diabetics to stop taking their meds
and second question when did they become God? I think God created all kinds of methods for us to be healed. We are lucky to have the chances to find them.

BTW, I am also a diabetic, and if anyone were to tell me to stop doing my insulin shots, then I would definitely tell them I hope they realize a person with diabetes can go blind or lose a limb without insulin. And go into renal failure and have to go on dialysis three days a week, like my father did before he passed away last fall. Or can go into a coma and eventually die! I would NOT let any of those folks take over my health conditions and tell me to quit taking meds. Do they want to bury me?

My god tells me to take meds and do my insulin, that's what would I tell them. He/she whispers to me every day.

 

[masterjen]

Good one!

 

[AlohaBird]

KKKM,
It sounds like those church members you describe need to pull their heads out of the Middle Ages. You did what you could to educate them and they still won't listen so I'm glad you are changing churches and not wasting any more effort on them. Seriously, it sounds like they could be the types to fire you up as the centerpiece at the church bonfire tied to a stake all the time saying that it was for the salvation of your soul. Some people really need to evolve.

 

[Nakamova]

Sometimes coping with epilepsy means leaving behind an individual or community (family, friends, church community, colleagues) that is shaming or hostile, and finding a new one that is empowering and supportive. If you have reached out in good faith to those around you and they remain toxic and close-minded, then you should move on for your own well-being. Beyond a certain point you can't control how they feel about you, but you can focus on how you feel about yourself.

I want people to see ME, not my disease.

It can help to be direct and matter-of-fact. If someone wants to define you by your health, then you could respond in kind: "Yes, I'm the person with epilepsy -- you must be the person with asthma [bad eyesight/foot fungus/halitosis]." Sometimes it can help to expect the best of someone and let them know that preemptively: "It means so much to me that you are able to be unconditionally supportive." Sometimes you need to expect the best, but prepare for the worst: "I'm sorry that our interactions are so stressful and unpleasant; for both our sakes, I'm choosing not to continue them."

Best of luck as you move forward! And congratulations on finding CWE! It's a great place to vent and ask for support when other communities may get you down.

 

[valeriedl]

Just some real brief info about me. I am not a religious person but I have no problems with people who are and I've never started any sort of fight over who's right and who's wrong when it comes to religion. The main reason that I'm not religious is because there are so many different religions and so many different Gods all over the world - Which one is the right one?

I don't know if you want to consider glasses as a medicine but how many people wear glasses because they wouldn't be able to see with out them? They must not have prayed enough to have perfect vision?

I agree with Cint too. I bet if you looked in some of the women's purses who go to the church you would find medicine for something. Even if it's just Tylenol to take for headaches.

When my grandma had severe heart problems and was in the hospital hooked up to all sorts of IVs and monitors many people told me "I'll pray for her". I always told them thank you that would be very nice. Well guess what, even after all the praying that these people supposedly did my grandma still died. Even after my grandma had passed away people had told me that they had prayed for her. I wanted to yell at these people and tell them that they must not have prayed enough because my grandma just had her funeral.

 

[MouseyMouse]

I used to attend church, to follow with what my mom and grandmother have taught me. I really don't wish for this to turn into a religious battle of sorts, but I have since stopped going to church -- and it's not because I've lost my faith -- I have not. It is simply because I find in church that there seem to be some very opinionated people that have a clear outline that there is one single path, and they are right and that there is no way to change their mind.

I am some what of a free spirit and think that with every scenario presented there are multiple options - not just one.

Take E for example - there are now tons of ways to help: diet, medications, VNS, etc etc etc. Which one is the right one simply depends on which path that individual plans on taking.

When people start quoting bible scripture improperly, to prove a point -- I think this is not right either. It may add some weight to the argument -- but it's not a definitive argument winner. Every line of scripture can be interpreted differently depending on the situation of the conversation.

To say that it's not ok for you to seek help, the way you see fit, I don't think is proper -- religion or not. If someone was having a heart attack in church and everyone stopped and said that he needed to be healed in Jesus' name -- that Jesus will save him, wouldn't that strike controversy?

This is a scary subject to broach - but coming from someone who has alienated herself from everyone except her boyfriend - you can't call people your friends if they disapprove of what you're doing. I would continue to go to church, but just not talk to them about anything If they ask - everything is ok - or you choose not to discuss "that" with them.

I hope that you find the answers that you are looking for here - I assure you that you will find no scrutiny here - only loving open arms! I know that I have.

Welcome and good luck - I hope that I've helped.

 

[Dignan]

Hi. I'm new here and have a Situational question. I am a person of faith and attend church regularly. I am Also involved in our children's ministry and community outreach program. It has taken a long tome to get my seizures under control and I worked hard! I experience simple and complex partial seizures mostly as truly of a TBI.
My concern is this...there are a few certain people that are disapproving of my taking meds for E. They expect me to be healed in Jesus' name in an instant. They believe an outdated doctrine that states if a person isn't healed; they are not Believing enough for healing/lacking faith. The whole church isn't this way, just a few influential Members in positions of authority. Their attitude towards me is negative and rude. At times they have accused me of just trying to get attention or just being crazy.
I have limited my interaction with those people; given them Literature from the epilepsy foundation, showed them Bible verses that negate their doctrinal beliefs and ultimately ignore them. I feel such pressure to
Be healed feel as though I am failing because my seizure activity has increased significantly in the past 6months (high stress, diagnosed w/Hashimoto's thyroiditis, disability review).
What are some ways to effectively handle negative people like this? What do I do when my faith is attacked? Is this as big a deal As it feels to me? I am changing churches and don't want a repeat. I want people to see ME, not my disease.

These people are ignorant. Leave them behind, as they are not worth worrying yourself over for 1 minute.

 

[Matthew74]

The "health and wealth gospel" is not the Gospel. It's not outdated, it was never true. In the Middle Ages monks and nuns ran hospitals and practiced medicine using herbs. The Mayo Clinic, always a center of advanced medicine, was started by Methodists and Catholic Nuns. Lots, if not most, of the greatest hospitals have religious roots. Sts. Cosmas and Damian, St. Pantelaimon, and even the Apostle and Evangelist Luke were physicians and practiced medicine.

I agree that you should try not to take those people too seriously. At best they are ignorant, at worst they are self-righteous and judgemental. They, not your faith, are the stumbling block. Don't let them distract you.

People of truly great faith do not look down on those of lesser faith, they have love and compassion for them. Faith isn't proven by having it easy, it comes from things like being persecuted, getting sick, and loosing everything. That's the way Job did it, that's the way Paul did it, and that's the way the Holy Martyrs and the Church do it. Christ was crucified. There is no resurrection without the cross.

Jesus didn't rebuke people for a lack of faith because they were seeing doctors! He rebuked them because they were like all of us, even the Apostles! The question wasn't who was taking remedies, but who Jesus is. A man said to Jesus, "I believe, help my unbelief." We should be like him. Jesus reserved special words for those "who bind up heavy burdens for others, which they themselves are unwilling to lift a finger to move."

So, bear with those who accuse you for not having faith and forgive them, because they don't know what they are talking about. They might learn something. If you need to find another church, because they won't leave you be, that's ok.

 

[Emee]

Ditto to nakamova, mouseymouse, dignan, & matthew 24. What med's you take is none of the church's business. It's their business to teach the word of God & not to judge. I'm not judging them but IMHO, what they are doing is meddling in your business.

 

[KitKatKatyMacs]

I really, really appreciate your replies! I thought perhaps I was too sensitive or blowing it out of proportion. I really think not however. I believe The person in question is just immature and twisting the Word of God to suit her own agenda.
I have been praying and considering leaving this church for a year now. I have finally decided that I have outgrown them. There is a bit too much health an wealth prosperity junk for my liking. I believe that is a false doctrine that harms not helps. I don't think all church members are like the person I described. Yet there does seem to be an ignorance or cultural myths in place related to disability and chronic illness. It's really sad that modern culture is like that. I have visited several other local churches recently (with my service dog) and have had pleasant experiences thus far. I am Hopeful in finding a new place of worship in which to an equal part of the community

 

[Juju26]

My mother was the same way when my seizures began, but after years of arguments, tears and prayers we both are good now. I accepted me having epilepsy, medication and diet, almost a year before she did. I believed in prayer to GOD to help me, medication, education and acceptance. My mother on the other had just believed in prayer and spiritual/religious healing & rituals. She now sees that my seizures are controlled by my medication and my diet, she still believes in spiritual healing, but no longer ignores the strength of medicine like she used to.

I loved looking to this prayer when trying to understand what I was going through, and when reading articles about epilepsy, I still do.


"GOD grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference".

 

[Emee]

I'm sure you are prayerful about the situation & God will give you discernment about what to do in this situation.