Does any other supporter feel that it’s difficult to engage in these conversations because you don’t want to overstep/act like you know more than you do? How do you handle those scenarios? And to those living with OCD, what do you like to see from your loved ones when it comes to these discussions?
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Wow, such great information you guys!! Like @saaed , I am a parent of someone with OCD and my biggest and constant struggle is wanting to reassure her and make her suffering go away. There is no greater pain than to watch your child suffer and not know how to fix it. I find that speaking honestly and openly with Ali helps immensely in addition to family therapy sessions. The feedback that Ali provided above has been extremely helpful in supporting her when she's struggling and my initial instinct is to reassure or comfort her.
Thank you @Maia Fattahi for your comments as we supporters sometimes need encouragement, too, and to know that we're on the right track for learning how to support you guys in the best way. I think my request would be for you guys to always be candid with us in what we're doing that may be helpful vs. not helpful because sometimes we simply may not know.
You guys are so determined and strong in your continued fight against OCD and I'm super proud of both of you! @Ali Wiggins @Maia Fattahi
Hi all! As someone with lived experience, I'd say that I really love any and all engagement from supporters. Your involvement––whether that is asking questions, reading about our experiences to educate yourselves, sharing our content, supporting and giving advice to other supporters, and generally just showing up (becoming a member, saying hello in the forums, commenting/liking posts)––shows us that you are here and putting in effort to better understand our experiences and better support us.
@saaed, to your key point: I think there is a crucial difference between supporting someone and trying to stop their suffering. The unfortunate truth is that our supporters cannot possibly protect us from experiencing pain or anxiety and provide a solution for every issue we face. However, they can be present with us and listen non-judgmentally. The immediate urge for any supporter is likely to problem-solve or tell us that everything will be okay, that our worries are unjustified or illogical––and that's completely understandable! Many of our obsessions are unjustified or illogical. However, this response, despite all good intentions, is problematic in that it ends up accommodating our OCD symptoms and feeding into the cycle. (We begin to lean on you for reassurance or expect you to accommodate our symptoms––a pattern that strengthens the belief that our obsessions are things to be feared and our compulsions are somehow protecting us from those feared outcomes. By accommodating our OCD, we miss out on crucial opportunities to learn that we can resist our rituals/compulsions, we can tolerate the experience of distress/discomfort/uncertainty, and continue living our lives with meaning.) I'd argue that it isn't the worst thing you can do to offer advice or possible solutions, but that response doesn't get us very far because we end up treating the situational dilemma instead of the emotional/behavioral response to it. In OCD, it isn't the nature of the obsessions that's the issue, it's our difficulty tolerating the feelings of distress or uncertainty that arise from the obsessions. Hence, advice or solutions targeted at the particular situation cannot resolve the core issue. In some cases, such solutions may actually accommodate OCD or promote avoidance (a form of compulsion).
I certainly wouldn't expect a loved one to know the "right" thing to say or do when I am stuck ruminating or ritualizing––most people, including many clinicians, do not know what is helpful vs. hurtful to say in these scenarios. I don't expect anyone to know what's a helpful thing to say...I often don't know what would be helpful to hear. Likewise, I don't expect any supporter to know a "right" way to engage in the Hard Quirk community––there isn't really a "right" way. What I hope for, though, is that my supporters are willing to show up for me. I hope that they are willing to take time to educate themselves and learn more about what I might be going through. I hope that they are willing to actively listen without judgment, knowing my fears are likely illogical, yet feel very real. I hope that they have the humility to recognize that they do not possess the power or skills to "fix" my OCD or prevent me from experiencing distress.
I feel honored, respected, and supported simply by having your presence here.
Supporters & loved ones––you are valuable in many ways, one of which being that you know us outside of illness. You know our interests, what motivates us, what our goals are, what we value most, who we love, what our soft spots are, what we are passionate about... This is your superpower. You may not be able to fight our OCD for us, but you can use these things as reminders of why we are fighting our OCD, and that we have some pretty solid people backing us up in this fight.
As parents of someone with OCD, my wife and I have learned that the best thing we can do is to listen with genuine curiosity. We don't know how exactly the person with OCD feels and to pretend otherwise is invalidating. What seems to help the most, and what is recommended by clinicians, is to validate the emotions they are feeling without passing judgement. About the worse thing you can do is offer advice or "solutions" on how to address their stress.
As parents, our natural instinct is to want to make our children's suffering go away. We often jump right into fixing their problem instead of listening to them. It is not easy to do. It takes a lot of practice and we still have to work at it after many years.
This website has been very helpful for us to get a wider perspective from those struggling from OCD and intrusive thoughts.
We'd like to hear from others who are supporters of someone with OCD.