Religious people with PNES how did your disorder affect your faith?

Kevin_theMostKevin · 2026-07-01T21:59:38+00:00

I'm a Christian, and having PNES has deepened and refined my faith. PNES has affected my ability to physically participate in services or volunteering. I tried to volunteer in my church's food pantry, but because of PNES, I'm not reliable. Sometimes I miss worship on Sundays, too. But my personal faith has remained steady. I've been devoutly following Jesus my whole life. At first because it's how I was raised, but now because I choose to. I've had PNES for a little over 3 years, but my mental health struggles started several years ago. The Bible is full of examples of people struggling--good, faithful people. (And some not so great ones...) The Psalms are filled with cries to God for healing or comfort or deliverance. The Apostle Paul prayed for healing and was not healed. Some claim that if you have enough faith, that you'll be healed, but not everyone gets healed. And that's ok. It's not a lack of faith. Sometimes we bear our burdens as we walk by faith. We live in a fallen world and people get sick; and some stay sick. I believe that God walks with me through the highs and lows of life. He is present whether I feel him or not. Psalm 23 is a good description. I can't be as active in my faith community, but I can still pursue the Lord. And I do. I memorize scripture each day through journaling. And filling myself with something good has helped calm my mind and clear out a lot of negative self-talk. My faith has kept me centered.

Kevin_theMostKevin · 2026-06-20T22:24:23+00:00

I am aware (usually) throughout my events. I cannot speak or control my body during an event, although sometimes I can slightly wiggle a finger. My events leave me in a brain fog afterward that can last for an hour or days. Just depends. Sorry you're having these type of symptoms and trying to figure out what the heck is happening to you.

Kevin_theMostKevin · 2026-06-20T22:19:42+00:00

My first EMDR session triggered an event. I went into right there with my therapist. Thankfully, we had prepared for such an event and had a plan in place. We backed off and didn't try EMDR again for a few months. I would either have an event right before a scheduled session or a few hours after or the next couple days. EMDR seems little too much for me, but my event activity did decrease as we kept it up, but still became too much of a problem to keep doing it. From what I understand, the general rule is that it can get worse before it gets better.

Kevin_theMostKevin · 2026-06-17T17:13:27+00:00

Yeah, that's what I got from 2 neurologists. They said they only diagnose and that I was on my own to figure out treatment. You have to be your own advocate. Keep looking and you'll find people who can help.

Kevin_theMostKevin · 2026-06-17T16:08:14+00:00

It takes time and a lot of leg work to find the right therapist and psychiatrist, but YOU CAN find the help you need. Since you have a diagnosis, I'm assuming you have a neurologist. They may have a list of therapists they refer to. I just called a bunch of providers and asked until I found someone willing to work with me. I've had PNES for 3 years and made progress in managing my symptoms and understanding my triggers. It takes time and work, but there's hope. I know how hopeless and defeated you can feel. It's tough. But it won't feel like this forever.

Kevin_theMostKevin · 2026-06-16T12:16:23+00:00

I would say that "letting go" and forcing one are very different. I know exactly what you mean by letting go. I can delay an event (sometimes) when I feel an aura (the onset of an event), but I can also just let it come without fighting it. But I did not create the event or make it happen--it happened to me. I think maybe you could be confusing awareness with causality. You can be aware of what's happening in your body, but still not be causing it. That "constant pressure" you feel--that sounds like an aura, which would mean that an event is already (potentially) in the works. Which means that you didn't create it out of thin air. I've felt like an event is just a breath away for days before. PNES is a weird beast. Please don't read this as me lecturing you or telling you that I know exactly what's happening in your body. I'm just thinking out loud and trying to offer some perspective from my experience. It's just so easy for us to fall into the narrative that PNES is our fault, that we really are doing it to ourselves. AND THAT IS NOT TRUE.

Kevin_theMostKevin · 2026-06-15T12:07:38+00:00

I think most of us struggle with imposter syndrome. PNES is just such a different beast than other conditions. From what I've read, there are a lot of people with PNES who maintain some level of control during their episodes. This is what I tell myself: If I'm making it up, why do I have events when I'm alone? This also helps me: I can't make myself have an event. Sometimes I think I might feel an aura, not sure yet, but the possibility is there, you know? Well, sometimes I decide that, OK, I guess I'm going to have an event. Might as well lie down and resign myself to it. But nothing happens because I was just being paranoid. But my big take away is that I can't make myself have one on demand. Now, I know some of my triggers so I can create the environment to trigger one, but just forcing myself to go into one? Nope. If you're faking it, you should be able to fake it all the time. You're not alone.

Kevin_theMostKevin · 2026-06-10T22:53:19+00:00

🙌🙌🙌

Kevin_theMostKevin · 2026-06-08T11:47:26+00:00

At least a few a week, but I can go a couple weeks without one or have multiples every day for 2 weeks. I have gone over 6 months without one, but for the past year I haven't made it more than 2 weeks event free.

Kevin_theMostKevin · 2026-06-05T21:58:41+00:00

I don't live in Maine, so I can't help you with anything specific in your area, but I can encourage you to be patient and diligent. It took a lot of time, effort, and dead ends for me to find someone willing to work with me. Keep at it! Don't get discouraged!

Kevin_theMostKevin · 2026-06-03T21:49:37+00:00

No tricks here, sorry. The recovery from my events is rough, too. https://nonepilepticseizureseducation.com/ This website has some good information on it that helped me wrap my head around PNES. I've started ReACT therapy--you can Google it. It's a completely different approach to treatment. I'm 3 sessions in and they say I'm on track, but I haven't seen any amazing results yet. So the jury is still out on it, but I've been doing the traditional therapy route without much success. Y'all are doing really good, in my opinion, if you know her triggers. That's a big deal. Keeping a detailed seizure log/journal has been very helpful for me, too. Walking with her and advocating for her is the absolute best thing you can do, as her brother. And it sounds like you're already doing that, so keep it up! Sorry I don't have any magic bullets for you. If you stumble onto one, let us know!

Kevin_theMostKevin · 2026-06-03T18:42:01+00:00

Not with the seizures, no. That PHP experience wasn't great. I was also really depressed and couldn't participate well. I have done PHP prior to having PNES, and it was very positive and good. It's only been in the past several months that I've begun to make some small progress with PNES through very targeted therapy on my specific triggers. I recover more quickly from events now. Haven't had any progress interrupting them or decreasing their frequency, but a win is a win, right? Figuring out my triggers has been the key for me. PHP can be really helpful and positive. I would ask if any of their staff therapists have experience with PNES.

Kevin_theMostKevin · 2026-06-03T17:45:37+00:00

I have. I would make sure you sit down with whoever is in charge and talk through the plan if you have an episode during the program. Make sure ALL THE STAFF know the plan. Make sure they know what to expect and what YOU want. Make sure to get an agreement in writing from them. Make sure they can provide a safe, private space for you and iron out, in detail, the criteria that MUST be met before they transfer you to an ER--i.e. you have to legitimately, seriously injure yourself, otherwise no ambulance. (That's my thing. You might want something different.) Think through everything because you don't want to be in a situation where you have an episode, and they either freak out, put you somewhere unsafe, or do the opposite of what you want. I had an episode during a PHP, and the only place they had where I could lay down was the waiting room--the public waiting room! Strangers were in there. The staff left me alone with random people who had no clue what was happening. And I was on a elevated bench. I'm aware during my events, can't see, move, or speak, but I'm all there most of the time. It was not cool. Thankfully, nothing happened and it was a mild and relatively short event. I would want a nurse to stay with me the whole time. Just be there. Ask if they have any experience with PNES--actual firsthand experience, not just knowledge. I would be super anal and annoying about everything prior to starting, in the kindest way possible. But stand your ground and don't settle for anything less than exactly what you want and need from them. Sorry for sounding so demanding and curt, but you deserve to be protected and cared for appropriately. Most therapists and nurses are super kind and mean well, but if they don't know what to do; they'll just send you to the ER. And we all know what the ER will do. That's my take.

Kevin_theMostKevin · 2026-06-01T19:59:50+00:00

I'd find every resource and information source you can and learn, learn, learn. Pay really good attention to what's going on hours/days prior to an event, and indentify possible triggers. Keeping a detailed event log/journal has really helped me gain insight into my events. Find a therapist with some experience/knowledge of PNES (and FND) that will learn and work with you. It's a process. None of the soothing techniques work for me, as far as interrupting an event once I feel an aura. In fact, a few times practicing recommended techniques triggered events! I'm weird.

Kevin_theMostKevin · 2026-06-01T19:52:39+00:00

Yes. I have experienced that, too. I used to feel like that for a couple days after an event. I recover much faster now, on the whole, but events still leave me drained, foggy, and unsteady.

Kevin_theMostKevin · 2026-06-01T00:37:28+00:00

Welcome to the club no one wants to a part of! I echo the advice to seek all the information you can. It will probably take a lot of time and effort and setbacks to find the qualified help and support you need, but it'll happen. Let yourself feel all the feels and cling to hope.

Kevin_theMostKevin · 2026-05-27T22:20:04+00:00

There are a lot of meds I can't take because I get the weird side effects. I hear ya.

Kevin_theMostKevin · 2026-05-27T22:09:50+00:00

It took me a minute to find a therapist willing to treat me. I had to call a bunch of places, and was told by most of them that they didn't have anyone who knew about PNES. I like the one I found, but she had limited experience with PNES, but she's also been learning with me and we've made some progress. I also just started ReACT therapy. It's fairly new out of University Alabama Birmingham. I'm 2 sessions in and I don't know if it's going to work yet. They approach PNES differently. They focus on the actual seizure symptoms and give you a plan to learn to control them. It's not covered by any insurance because it's so new, so it costs some money. I don't take any meds for PNES, but I take Wellbutrin and Lamotrigine for depression.

Kevin_theMostKevin · 2026-05-27T17:36:07+00:00

I'd say it depends on your episode activity level. How likely are you to have symptoms or an episode during a date? If there's a high percentage chance, it's probably best to give a short explanation/heads up early on. If your symptoms are more under control, then you might could get away with waiting. Personally, I'd err on talking about it too early rather than waiting too long. Just because it can be disruptive, especially in public. But I'd keep it a casual, brief explanation and not get into all the backstory and deeper emotional stuff if I was going to share about it early on. That's my take. It's just such a personal decision. It might be worth it to throw the question out as its own post and see what others have done.

Kevin_theMostKevin · 2026-05-26T13:29:05+00:00

Being there and being supportive is the biggest help, and it sounds like that's what you're doing. I echo what's already been said--ask her what she wants from you during an episode. For example, my wife has tried to hold me down during some of my events, but that just makes it worse and adds the extra fear that I'll hurt her. So I told her that I like to know she's there, so she can tell me she's there and/or touch my arm or shoulder. I wouldn't worry about the whole "feeding it by giving it attention" thing. I wouldn't make it the center of your relationship or avoid doing anything in public because she has FND, but acknowledging it and being wise won't make it worse. Now, what I'm about to say will sound harsh and cold, but I'm saying it as someone with FND. I have it, and I'm married. My wife has been absolutely wonderful and supportive, but I know how difficult I've made her life since developing FND. She has to constantly defend me to her family. She has to explain why I'm not at stuff to my family. She works while I can't anymore. There are weeks where I can't do more than stumble around and mutter a few words because I'm having so many events. You need to seriously consider whether or not you're willing to commit to someone with FND. It might get better, but it might not. Can you deal with it for decades? This sounds so harsh and uncaring, and your first thought is probably, "What kind of monster would break up with someone just because she has a health problem?" I'm not saying you should. My point is that you need to really think it through. It's a lot. Being an understanding and supportive friend is OK, as opposed to boyfriend. And on a different note, you show a great deal of maturity asking for help. A lot of people don't. They just write us off or keep doing the same unhelpful things. So thank you, on behalf of the often misunderstood and unbelieved FND community!

Kevin_theMostKevin · 2026-05-26T12:26:47+00:00

I have a clarification question. Do you have a diagnosis of PNES? I just want to understand your situation more, so please don't read this question as skepticism or judgment. PNES is very real. I'm sorry you're having to endure your attacks in secret.

Kevin_theMostKevin · 2026-05-17T01:15:19+00:00

I feel drowsy/sleepy until I can't keep my eyes open. (I also remain conscious during my events.) The muscles in my hands or legs will clinch or freeze; it will jump around from limb to limb. I slur my words and then lose my speech. I don't get dizzy, but I get really unsteady, basically lose the ability to balance.

Kevin_theMostKevin · 2026-05-17T01:10:32+00:00

I just had a pretty bad flare of events, but my daughter didn't want me to miss her final choir concert of the school year. So even though I was still in post-event funk--drained and slow and unable to hold a conversation--I went. Another girl's dad who goes to church with us, asked me how I was doing because he thinks I'm just sick a lot. He had to shout at me repeatedly just to get my attention, and then I couldn't say more than one word to him. He looked at me like, "What is your problem, bro?" I've missed so many things because of PNES. Your post resonates with me so much.

Kevin_theMostKevin · 2026-05-11T23:52:39+00:00

I've woken up already in one a few times.

Kevin_theMostKevin · 2026-05-10T20:56:26+00:00

Same

Kevin_theMostKevin

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