Let me just say this right from the get go:
I don’t have the answer to this question yet. I’m still trying to figure it out and it’s going kind of rough. A few of the pros and cons I have done over the course of time have been inconclusive: running into the problem of how to quantify and numerically decode when my cons are as long as my pros and whether I should be identifying percentages towards either of them. It’s…. complicated. So, I don’t know the answer yet myself. It’s tricky and difficult.
Secondly, here are some of my boundaries (as I’m finding and being taught that they will have to be more consistent in me reiterating them each and every time I can):
- I am not a crisis service, mental health professional or expert in mental health. I like to say I’m an “expert only in my own lived experiences” but I don’t have any licenses or degrees besides a BS in psychology. (I do have some trainings though but nothing like a master’s or PhD.) Basically, I’m not an appropriate person or place for others to reveal crisis information or to get direct professional help from. Of course, if you feel that you’re a danger to yourself and it’s between telling me or no one, I’d rather you tell me, because I will not keep safety information private and will instead link you towards local or national resources or call emergency services etc. So, if you come to me for help, I can get you to the appropriate resources, and you can get help in an indirect way, but either way I’ll point you to where you need to go and practice my own self-care to maintain my own health, wellness and stability.
- What can I offer? I can offer peer support in the sense of being non-judgmental, pro-recovery, positivity, hope, what’s helped me and worked for me, providing inspiration (I hope!), the skills or treatments that were most life-changing for me, “I” statements (sometimes I use “we” as well though, I try to limit the “you” statements as much as I can) and empathy, kindness, validation, healthy coping strategies, problem-solving and compassion. Again, if it’s an issue regarding safety, I will do everything in my power to get you the resources and help you need and deserve, and will NOT keep matters regarding safety confidential. I, of course, would prefer to not be in that situation, but if it happens, I know where I can go for help to help you, if that makes sense.
- Please do not discuss specific methods of suicidality or self-harm with me. In regards to eating disorders (EDs), please do not discuss specific numerical measurements like weights, calories, and unhealthy behaviors (like tools used for purging or things to that effect). For self-harm you can specify the type of self-harm, for instance I’ll say things like scratching or skin picking, but don’t go into what you use to hurt yourself, how to hurt one’s self, etc. That’s just unhelpful information and unnecessary. (As an example: If you want to say you were thinking about “standing on a ledge” that’s enough general information for me to picture what you mean. If you were to say “heights” that’s a little more specific and not helpful. And if you were to say “this specific building on 34th street at this time etc.” that’s WAY too specific and a more appropriate conversation with a crisis line, a mental health professional, etc. The less specific you can be the better. Think of the too specifics being unhealthy or inappropriate people and places for that information. Essentially, you’ll have to be a little more creative to abide by this boundary of mine.) I also as of July 2021 don’t wish for my space on the Internet to be a how to guide for hurting one’s self, because the Internet is already so much a place of that. This is to keep myself safe, keep you safe and keep others safe as well. So, please respect this as best as you can. If you mess up here and there, that’s okay, but continued misuse will result in me speaking to you directly or blocking you if need be or moderating comments, etc. Whatever is in my power, I will pursue. Thank youuuu for your cooperation!!
- I am unavailable for support/guidance between the hours of 10p EST and 9am EST. I am also unavailable the days that I work at Amaryllis which is currently Sat and Sun mornings.
- If you happen to have known me before 2018 or in 2018, I would rather you didn’t compare how “bad” things were for me in my life then COMPARED to how well things are for me now. The reasoning for this is because when people compare how “bad” things were for me, I know it’s supposed to make me feel proud of how far I’ve come, however, it has the opposite effect. Instead, my brain makes me think that it was “oh so great” back then and wants me to go back to those very dark times. So, it’s unhelpful. Thanks!!
- As for confidentiality, unless broken in the case of safety concerns, I won’t repeat back specific information regarding your identity or who you are with others. If anything, I’d make a pseudonym for you and discuss matters of our conversation, not verbatim, with people like my partner, my Mom, my therapist/psychiatrist, or change certain details of who you are and focus more on how I’m handling or struggling with the information you’ve shared with me. For instance, if I felt dysregulated, I’d discuss what led to that dysregulation but keep my focus on how I can problem solve it and work through it going forwards.
- As for what you can share about me with others, I’m okay with a changed name (pseudonym/pronouns) or keeping my name (Raquel) the same. Of course, please don’t doxx me but if you want to share my age, my first name, my experiences, etc. then that’s totally fine by me. I do use she/her pronouns just in case anyone was wondering that! Thanks!! 🤗🙂😘
Honestly, I think that’s about all I’ve got!
Which is definitely, definitely plenty it feels ahaha. For those wondering after all of that, regarding this post:
Trigger Warning: Discussion of self-harm, past suicidal ideation, BPD, depression and OCD.
So, what DID I want to talk about in this piece?
Honestly it’s been SUCH a long time since I’ve blogged. Like, far, far too long. And I wasn’t even necessarily going to do this post but it was definitely gnawing at me and I realized I had enough to say and think and do with this information (I’m between journals at the moment, my routine is severely off lately) than to just keep it to myself with no one else to know about it for weeks.
So, here I am!
Let’s regroup for a moment, shall we?
The question I have for creating this post:
When are Support Groups Helpful vs Harmful?
So let’s talk about some context first.
I started going to an OCD support group for the first time ever in fall 2015 when I spent 5 weeks at the OCD-Institute at Belmont MA. It was not a locked unit and it was actually pretty enjoyable for a treatment type of thing. I live, if you don’t know, with OCD on self-harm and suicide obsessions (not genuine intent; though I do also live with depression, BPD, trichotillomania (hair pulling), dermatillomania (skin picking) and essentially intrusive thoughts of hurting myself and genuine thoughts of hurting myself, though I’m much, much better as of now in 2021!!!). I was diagnosed with OCD by my university’s Counseling Center in fall 2014 for further context. I also had an OCD specialized therapist from about spring 2015 – winter 2016.
I’ve had lots of different treatments over the years since 2014: ERP, CBT, DBT, medications, individual therapy, hospitalizations, OCD-I, ECT, group therapy, short term and long term day programs, family therapy etc.
I’ve also been a prominent mental health advocate since spring 2016 to now, both online and offline. Advocacy is the central part of me and who I am, I think, though I’ve become more recovery based over the last three years, I’d say. To me, advocacy is sharing my story with lived experiences in the field of mental health conditions and sharing what’s helped me most and how I handle myself and my situations. For me, it’s overcoming adversity and getting a leg up over the bullshit my brain comes up with on a daily basis. I am VERY open about my struggles, or at least in the past I certainly was, probably a little too much let’s be honest but yeah, I am open and I talk about them and nowadays I like to focus more on what I can DO about them but overall talking and sharing my story has been an integral part of finding meaning and purpose in my life. (If you’ve been with me since the beginning or if you ever plow through some of my Archived posts, you’ll also see I was an advocate while at university as well, sharing my recovery and my journey through it via newspaper articles, something I’m finding in the last year with this pandemic that I miss and wish I could get back into in some way, even if it’s differently.)
I’ve only ever been to OCD support groups over the course of my treatment. I’ve never been to a DBSA group or a NAMI based group either (NAMI being the National Alliance on Mental Illness where I do my advocacy work from).
I started going pretty regularly to the Belmont support group while I was at the OCD-I until about fall of 2017, if I had to guess.
In 2018 I don’t think I really went at all, maybe once or twice over the course of the year?
2019, I think I went a couple of times. I was at my long term day program Passages which was giving me PLENTY of mental health topics and surroundings that I didn’t need something like a support group to go to (same as well for the blogosphere.)
2020, the pandemic hit and by June I was definitely starting to return to more of them. Naturally, all the support groups went virtual on Zoom and I started to attend ones like Cambridge and eventually Worcester alongside the Belmont here and there.
Now is when we get to the meat of this post (or, with the gif added above, the slicing of the cake portion of things). I’ve been going to support groups decently regularly over the last year and I’m no closer to answering this big, big question I’ve surrounded this blog post about. Which is super frustrating–and exactly the emotion I feel when I’m at a support group.
It’s so frustrating.
I honestly don’t know what I live with mental health conditions-wise anymore. I mean, for YEARS, I’ve blamed it on OCD but the more I’m at these support groups, the more I realize what I’m “defining” as OCD may NOT be that at all. And then of course, though, me trying to figure out if it IS OCD, is OCD itself. Trying to find that certainty and conclusion and all.
Personally, I definitely view knowledge as power. And I know that the purpose of diagnostics is to guide treatment and for insurance purposes. So it frustrates me to no end that I can’t pinpoint or understand if what I am feeling and dealing with is even this big bad OCD monster I’ve always said it is but may not actually be all along. Then of course, WHAT AM I dealing with if it’s NOT OCD? Oooof.
To me, I blame these things on OCD, what I’ve identified as OCD and what’s consistent up until today:
And if you don’t know anything about OCD and have somehow found this post, OCD obsessions are the persistent and intrusive thoughts regarding whatever topic that gives the survivor distress. It questions and is often called the doubting disease because it makes a person wonder and question if they’re truly wanting to act on a thought or that they might lose control just by having the thought even if they do not want to act on it, etc. So, there’s all sorts of OCD topics out there, as long as it gives the survivor distress, it will cling to it tightly. For instance, moral questioning like if you’re a good person; harm OCD if you have thoughts of hurting others or yourself; contamination; having to count or check things (mentally or physically); did I just run over someone while I was driving? etc.
Compulsions are the behavioral or mental things a survivor does to cancel out, however momentary and temporary the relief is, the distress or anxiety that they are feeling. So, if it was a contamination thing, maybe one compulsion could be hand washing; or if it was a car thing, going back to check to see if there was any evidence for having run someone or something over; or for harm OCD to others, checking that all the eating utensils are still there or checking memories for any indication you’d want that person harmed etc.
Here’s what I’ve always blamed OCD on that might not even BE OCD but that I can’t find is anything else either (and the act of trying to figure it out is OCD in disguise, as it were, so I’m kinda fucked lmao 😂😅🙄😶) ((I’ll start with the classics from years ago and go more into later years/current struggles))
- Intrusive comments/loop tapes; for me in the beginning it was hearing my brain say “Kill Yourself” or “You should just kill yourself” on repeat for hours at a time.
- More currently, and I haven’t had a new phrase in over 4+ years, but now it’s “Just do it” in terms of acting on an intrusive image of harm, so, gee, thanks OCD! Ugh. ((I will say it’s a little alarming that in the last month the OCD has come up with and attached itself to a brand new phrase, and so maybe that is some of the anxiety? I don’t know.))
- Memory checking for any intention to act on the thoughts (way back in the beginning).
- Now it’s more of the thought action fusion involved so like when I have an intrusive image of harm it’s increasingly more difficult, whenever I am struggling (which isn’t as often, let’s be clear) for me to separate the fact that what is happening inside my HEAD is NOT happening truly in reality. It’s probably as close to hallucinating as I can get. It’s just so hard to center myself and remember that it’s not actually happening
- Also, trauma memories. I’ve only experienced trauma at the hands of my mental health conditions and what feels like a crisis where there’s a lot of trauma memories in truth is really just OCD and intrusive images of things that I’ve NEVER truly acted on. Trauma memories definitely come up the most often in support groups I find. I went to one last night and there was talk of police officers and all my encounters with them in the past was something I got sidetracked by
- Avoidance: and this is a behavioral pattern I am STILL struggling with today and have for years and years. In terms of OCD I’ll avoid things like certain places with ledges or certain drives home etc. I’ll avoid my feelings most often by over-distracting with content etc. I’ll avoid, potentially, with support groups. I’m rarely ever in the actual moment, I’m usually doing other things like playing with thinking putty or having music going etc. I honestly don’t know the difference between when is it avoiding and when is it self-soothing. Because when I’m spoken about self-soothing in therapy, my therapist thinks it’s actually avoidance. So, I have no idea on this tactic that’s for sure
- I don’t, this isn’t really OCD but it kind of is, like to admit when I’m anxious. Anxiety is just an emotion for me that I HATE to admit when I am, so instead of noticing my bodily cues, I just plow forwards until I’m behaviorally acting on the anxiety so like hair pulling or skin picking. It’s something I really have to continue working on. Gwah For skin picking itself it’s definitely an inconsistency feeling on the skin that gets me to start going at it. Bleh
- Reassurance seeking: A BIG one, from the beginning to now, I’ll wonder if these ‘thought commands’ (Just do it) is really OCD or if it’s something else like psychosis and then I’m researching it and uncovering, AHA it’s OCD in disguise!! So yeah, even reassurance seeking with validation from others and such. Ooof.
- Rumination: fixating on the OCD, talking about the OCD, thinking about the OCD etc. Wanting to think of old memories, old habits, old behaviors, old stuff. Spending hours and hours doing so (luckily I stop this a lot better now over the last 3 years)
- Glorification of harm and death. This is the biggest one. My brain likes to be like “Oh hey, you know this [suicide] plan? That would be awessssssome. We should totally go do that. It’ll be so relieving and so much fun. It’ll be great. Let’s go do that.” etc. It’s like this “oh so magical and sparkly thing will be so great and wonderful, you’re missing out on experiencing it by not doing it, etc.” It’s also like this “it would be so ironic/poetic/symbolic thing” or “it’s your destiny to die this way”.
- Alongside this is the glorification of near death experiences in particular. There’s something so tantalizing to me about a near death experience. Or actual death then coming back to life. And definitely the case if there are NO ill physical effects from it. I remember someone at Passages said there IS a name for this that people with substance use disorders can relate to but I can’t remember or they also couldn’t remember what the word was so I’ve never known
- Fixation continued: thinking of the OCD and harm, taking up more and more of my time etc. Again, hasn’t happened in ages luckily. If it came out in artwork that was also a compulsion too. I think I’m better at this but honestly I’m not sure.
- Little things that might become problems: rereading a book, is this OCD or is this me genuinely not paying attention while I read? etc. And the stubbornness that arises when I refuse to let my brain win over me not reading a book etc (I love books so much). Doing certain things in matters of three, so like three heart emoticons etc. Keeping things like price tags for a bit or lots of hand sanitizers, is it hoarding? Eh. Maybe not.
- Distress: I really can only relate to the distress that these OCD or “OCD” things cause. If it is anxiety, and I’m sure some of it is, I refuse to acknowledge it. But so many more people have the anxiety as the prime and only emotion involved and I just can’t relate.
So, I mean, I hope that all makes sense.
The big thing I’m uncovering in these OCD Support groups I have been returning to is they are immensely triggering for me. And I wonder, is this a trigger that’s healthy (like an ERP opportunity) or is it risking my stability unnecessarily? A question to which I STILL cannot begin to answer, aggravatingly enough.
The biggest thing I’ve been trying on my own, without an OCD specialized therapist (and with little indication I’ll get one any time soon) is that I’m taking some charge in some ERPs myself, I’ve started a new video series on my Youtube channel called “Trudging Through Trauma” where I’ll use an ERP exposure during the filming process and another in the video editing process. I’d like to talk about some of my trauma experiences and name them and think them over and then do the opposite of them, so with the OCD I’d want to fixate and be consumed by them, when in reality I’ll just go self soothe or do something else for a bit etc. I don’t know, it could be self-exploitative I suppose but yeah, and I obviously wouldn’t go into unnecessary detail but for my own head it’d be there, I just wouldn’t vocalize it officially.
My Mom was also suggesting we do ERPs together too. Having someone be there could be safety ensuring and all. So I have that to mull over.
But overall, why I wanted to make this post is for this reason:
When is it helpful and when is it harmful? When is focusing on it vs distracting from it an exposure or just unhealthy?
Another thing, there’s no professional support or, as far as I know, guidance or trainings involved and that makes me wonder two things:
When is peer support bordering on playing therapist? and
What qualifications, if any, are expected in these group settings?
Now, specifically, I have my friend Gretchen (naturally not their true identity of course 💜). I’ve known Gretchen for, well, since the beginning of my support groups history. Gretchen has some … good and kind intentions but none of the boundaries in place to achieve them. Gretchen tends to bite off far more than she can chew.
And I never really mention in support groups my history with mental health advocacy (something I’ve decided to change actually going forwards, if for however long I may still attend them) but something that really bothered me in yesterday’s support group was this ongoing pressure or resistance to talking openly about the struggles with OCD with non-OCD individuals.
Personally, this just rubbed me in all the wrong ways. Like, is it supposed to be shameful? Should we really be encouraging the beginning types of co-dependency? Should it really be US vs THEM?
Also, what do we do about the pissing contests of whose experiences are worse? And what about how draining and depressing they can be on top of that? It just makes me wonder–at what point is ‘teaching’ skills or ‘experimenting with ideas’ playing therapist and overstepping what peer support is about? Should there be someone, a professional, around to navigate the waters of these groups better? Because it makes me wonder for sure….
Also sometimes they end on such depressing or retraumatizing states that it’s bewildering.
The other thing I struggle with is the line between reigniting my old behavioral pathways (getting attention for unhealthy purposes; i.e. holding a crisis session) and focusing on who I am today and getting help in the most helpful and healthy way today than/as opposed to how I once received it. Which means I’m really just a lot more guarded now and less likely to open up and be honest upfront. It’s very confusing.
(My apologies for how direct of an attack there is on Gretchen down below; she really does mean well. She has the best intentions in mind. Her boundaries and adhering to them is just troublesome.)
Overall, there’s just some things that Gretchen has done or said that makes me feel super uncomfortable, mainly breaking my boundaries, not intentionally but pretty often as is. I wonder if it’s possible to get a professional to sit in on a support group or two and see what their assessment is of the matter. Maybe that’s something worth exploring. I feel like Gretchen needs to (as horrible as this phrasing is) get her shit together to figure out what she can reasonably offer and when she’s overstepping. Like, Gretchen, you’re awesome, you’re great, a little less pissing contest would be best though. I get it was to be empathetic and ‘I’ve been there too’ but a minute of that would have sufficed, not fifteen. (And of course I’m going to be bringing this up to Gretchen herself too, because she’s the only person who can change these behaviors or be aware of them and adjust from there. I’m really not mad at her, I guess I just feel frustrated in general with where I sit on support groups and I REALLY want to be done with this blog post, it’s been sooo long)
My partner did suggest that maybe I’ve outgrown support groups as well. Which, could be very valid and true. They asked if there were different groups for OCD support for different stages of recovery, which I’m not sure exists, but is definitely worth looking into.
Well, I’m done complaining and typing and talking now. My wrists hurt, my words are being misspelled and I’m tired. I’ve been at this for almost two hours. That’s… exhausting.
So what do you think? After all this has been said, what do you think? Do my thoughts and experiences sound like maybe I should take a break from the support groups for a while and do some extra soul searching or could they be okay for me to attend and experiment more with in the future?
I’d love to know what you guys think. If you have the time and willingness to offer it to me. 💚💛🤍😁😙
Now I just have to go back and reread this post, edit and then upload. Maybe add another gif or two.
Thank you soooo much for reading. I hope something out of all of this was helpful or interesting or captivating if possible. I feel a strange crux between relief and unfinished. But, I’m going to go eat lunch and get ready to visit a phone store today, hopeful that I can get upgraded soon. So yeah. Maybe I’ll actually try to read that book of mine too. I was going to before I decided to do this post ahaha. Any who, more to come soon.
Let me know if you got this far with a cookie emoticon.
Thanks so much. xxx
Stay safe everybody!!!