We need support groups. You should belong to a support group. Why?
The meds are never enough. Whatever your problem is, if it’s bad enough that you need to be taking these crazy meds, you need some kind of talk therapy, too. And that applies to those of you with epilepsy, neuropathic pain disorders, migraines, sleep disorders and whatever hell else these meds might be used for. It may not necessarily be therapy therapy, like those of us with mental illnesses need, but even if you had the greatest childhood on the planet and you need to take an SSRI or other antidepressant for irritable bowel syndrome, you need to speak to a counselor of sorts to get an idea of how to live your life with IBS. And join a support group of people with IBS. Because most doctors are just going to give you meds. Yet a lot of these disorders and syndromes and such are totally life-changing, and you need a freaking instruction manual! Epilepsy kills!1 Neuropathic pain makes daily living a struggle. So even if you don’t need on-going therapy like someone with bipolar disorder, depression, chronic panic/anxiety or schizophrenia does, if it’s bad enough to required the meds listed on this site, it’s bad enough to seek the recommendations of a professional to advise you as to how you need to make changes to your life so it doesn’t suck as much as it has lately.
But what does that have to do with support groups? Everything! The counselors know only so much. For a lot of them your problem is an intellectual exercise. It’s not often that you find a professional counselor who actually has the problem they’re getting paid to solve for someone. Maybe they dealt with it for someone else in their life, and that’s pretty damn good. If you find someone with a personal stake in a disorder, that’s as good as finding someone who actually has it. Anyway, the thing that helps most is experience. Personal, direct experience. People who have gone through it all before. People who can tell you that you’re not alone, that you’re not the only freak like this. People who can give you practical advice about how to live your goddamn life with whatever it is you have.
So if what you have is bad enough to need meds, you have a lot of work ahead of you to get better. And there are a lot of people who are going through what you’re going through now, or have been through the same things. You don’t have to figure it all out. They’ve made a bunch of the mistakes for you already. Learn from them before you go off and make those same mistakes. Plus things are going to be a lot more difficult, things that used to be easy. Or at least easier. Everyday things, like going to work, or just getting your life together enough to eat something and do the goddamn dishes once in awhile. Stuff like that is a huge struggle when you’re mentally ill and/or having seizures and/or dealing with neuropathic pain. In a support group you get two things you’re not going to get from most anyone else – understanding about how shitty your life is because of an illness, and not a bunch of garbage about you’re being a lazy good-for-nothing slob; and practical coping techniques. Like they say in AA, “One day at a time.” Well that’s how it is when your brain hurts. You have to deal with one thing at a time one day at a time. So it’s from a support group for whatever you have that you’ll learn how to do the goddamn dishes often enough that you won’t hate yourself about it, and you’ll give yourself enough slack that you won’t hate yourself at all about these issues because you have a brain injury for God’s sake! Handy hint: I may be too much of an environmentalist to use them, but I won’t give anyone who has a brain injury shit about using paper plates and the like. We’ve all got enough, er, on our plates.
Everyone expects their families to support them in a time of crisis. HAH! Oh, that’s a good one! OK, Mouse and I have issues, but parts of our families have been supportive of us, let’s be clear on that. But we know of far too many people whose families dropped them like the red-headed step-child once the problem of a specific mental illness or neurological disorder was diagnosed. Face it, the stigma of mental illness and epilepsy is such that many people are completely freaked out, and don’t want a Schizoid Mary anywhere near them ever again. Or their families were the source of a lot of their problems to begin with, and not just the genetic source. So even if the family put up a front of support, it may not be such a good idea. But most humans need that kind of familial interaction and reassurance. Where are you going to find it? In your support group, that’s where. They quickly become families. You’ll find yourself closer to some of your support group members than you are to blood relatives. I’m not even sure how many siblings my mother has, let alone how many first cousins I have, what any of their names are or where they live. I know the name of only one of my half-siblings, but I don’t know where he is, if he’s still alive or anything like that. If my father weren’t famous at one time I’d have no idea about when he would finally die. But I send Christmas cards to support group members scattered across North America and keep tabs on them to make sure their lives are together and they’re doing what is needed to stay alive and relatively sane. I’m a probably an extreme example, but you get the idea.
And there’s the whole question of if you should be on meds at all. Everyone questions that. It’s not crazy thinking. OK, sometimes it is. Face it, if you’re bipolar, if you’re schizophrenic, if you’re epileptic, you always have to be on meds. There are a few very rare exceptions, but there’s no way in Hell I could tell you about who and what and how. There was also a retired woman in New Jersey who won the Lotto twice. Why did she keep playing after winning the first time? How is she going to live long enough to spend the money she won from the second jackpot? Odds-defying shit just happens. But the point is, there are some illnesses where you just have to keep taking your meds forever, or until they come up with something better, and that’s the way the world works. And being in a support group helps you stay on your freaking meds, as much as they suck. Please read my 12 Steps to Stay on Meds for when you feel like flushing all your meds down the toilet. But for a lot of other disorders, meds truly are optional, and you’re right to question if you need them or not. I sure as hell don’t know if you need them or if you don’t. Getting a second opinion is critical, but I’ll tell you what really helps, ask people who have the disorder. Ask them about how bad it is for them. Ask the ones who take meds and the ones who don’t. Find out from other people. It’s difficult to know what goes on inside of someone else’s head, but believe me, it helps them to talk these things out. Try to gauge just how badly it sucks for you and everyone else, and just how much the meds suck. Because it really does come down to what is going to suck less – the meds or the illness. You are the only person who can make the decision, but you do have to factor in how much emotional damage your illness is doing to people around you. People in a support group can give you that kind of perspective.
Talking it out is one of the best things you can do for most of your issues. Again, you may not even need meds for something like depression, anxiety or PTSD. Just talking it out with a therapist and, most importantly, a support group, along with a proper diet (And, like finding the right meds, finding the right diet is going to involve a lot of trial and error. Your mileage may vary. One size does not fit all. But I’m convinced that too many people eat too much crap, and that doesn’t help matters.) and regular exercise. You can’t be lazy. Whether you take pills or not, you have to eat well and exercise regularly if you expect to clear your head. But I digress. When you talk things out with a therapist, often the therapist will guide you along certain lines or to certain events. That is all well and good. And, presuming you have found the right therapist doing the right sort of therapy for your condition, it’s eventually going to get you to a place where you’re just not so fucked in the head all the time. But there are times when you just have to get whatever the hell is really bugging you off your chest however the hell you need to do it. And you need to tell it to people who have been through the same shit as you have. That’s where the support group is so freaking necessary. There is no other way to explain it, but those of us who are mentally ill are just shit magnets. Either we actively go out and cause trouble, or we internalize a lot of the weirdness in our heads and that just sets us up to be the victims of the universe. Usually the latter. Despite what you see on movies and TV, the mentally ill are six times more likely to be the victims of violent crime than the perpetrators. In a support group you can just let it all out! From the Dark Age through the Middle Ages to the Renaissance the popular form of treatment for mental illness in Europe was the exorcism of demons. In a way, they were on to something. We all have our personal demons that need to be exorcised. The therapist/priest can do only so much. I have a lot more faith in the shamanistic practice of the support group, where fellow wounded healers can help each other exorcise the demons within. The demons of child abuse, the demons of sexual assault, the demons of suicide attempts, the demons of surgery without anesthesia, the demons therapy that went way wrong, the demons of highly dysfunctional families, the demons of substance abuse, the demons of the horrible things done when manic, so many goddamn demons. In the circle of a support group these demons can be exorcised. Normal people want you to keep the demons inside of you. They can’t handle how ugly and painful those demons are. People have been “fired” by their therapists because their demons have been too ugly and painful. In the right support group you can finally exorcise the demons that have been gnawing away at your guts for so long. Out, demons, out!
Don’t forget to give back. Once you feel up to it, help others with your experiences. Talk about what you’ve been through. You never know, you may still have a few lingering imps in your system you need to get rid of years later.
Another resource for support is wherever you go for your spiritual needs. Be that online or face-to-face. Many spiritual groups deal with mental health / neurological issues as well. I’m all for getting spiritual assistance along with whatever other therapies you’re doing. I don’t have any pointers to particular groups because there are just too many, and you really have to find the practice that works for you.
As His Holiness the Dalai Lama said during a recent visit to San Francisco, all religions are good. Just find one. If you don’t like it, find another one. The religion doesn’t really matter, just as long as you’re doing something.
If anyone knows something about exorcising demons, it’s the religious types