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The increase of stigma due to one of the guidelines here

User Profile: AffyAvo
AffyAvo July 29th, 2018

I really disagree with one of the rules about no drug names, as this is something that further increases stigma.

A bigger part of the problem though is how this is being applied, it seems like certain drugs get a pass. One of the most recreationally used drugs is commonly mentioned in group rooms by many, including moderators. Today it was part of a guided discussion. I even see moderators joke about getting hooked up to this recreational drug by IV (not that it's actually done). I can't discuss the drug I use by IV though by name.

Addiction support also seems to get a pass on many drugs - and the connotation there is that it's negative.

So it seems like a commonly used drug gets a pass, it's not a 'problem'. Saying negative things about specific drugs is ok. See how this contributes to the stigma of many drugs?

For me, some of the most important awareness information for my condition requires naming drugs - it's important to know which ones have been shown to be ineffective but are commonly used by doctors anyway and to share those that do work. These rules prevent me from doing this. It could save a life by getting that information out there. But the rules prevent me from doing so, while a blind eye is turned to others that really don't need to be shared for such a vital reason.

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User Profile: bunnypants
bunnypants July 30th, 2018

@AffyAvo please submit screenshots if you seen this behaviour in the rooms, especially from mods.

i literally lost my fluff when after someone kept bringing up a substance some newbie in the room was like "is ____ something i should try?"

so, yeah. it's a really, honestly needed rule because people who come here with an addiction need to work on their addiction, not sit around casually chatting about it.

& then we get into complications of discussing medications we're on leading into people thinking they should try something, which is definitely something that needs to be curbed before it turns into all so many messes and people's feelings hurt.

so while the "no discussion, period" does not feel great, it feels more great than other options, yeah?

& 100% i do not want to hear that fluff in group chat x_x;

1 reply
User Profile: AffyAvo
AffyAvo OP July 30th, 2018

@bunnypants Not being able to mention the specific name doesn't really seem to serve a positive purpose IMO. Discussions related to suicide and the LGBTQ community have hurt feelings and words related to these were often avoided, but that just increased stigma.

When people talk about alcohol, it's quite obvious which alcohol they are referring to. Same with other medications.

Knowing the names of some things can be lifesaving though, which is more important IMO than hurt feelings.

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User Profile: AffyAvo
AffyAvo OP August 4th, 2018

And again, an honors project sends an alert to everyone that doesn't stick to these rules - I think the information is actually good with the inclusion, but other posts with other meds can be too. @Laura where is the consistency with this?

User Profile: EnergySensitive
EnergySensitive August 4th, 2018

Long post warning! Sorry!

I'm sure about 80-90% of members/listeners are on prescribed meds as a daily maintenance drug. Usually for the rest of our lives. As many know our bodies begin to be immune to certain drugs and adjustments need to be made. These meds are prescribed, not street drugs. With a community such as this, together we have lots of knowledge of how medications work and what's available on the market. We also have useful information from our doctors. With the age gaps in the sight we could certainly share experiences with certain meds. There are also age gaps of our psychiatrists each staying current about drugs but younger docs may not even consider meds used say 2 decades ago, that do in fact still work.

With all this we should be able to discuss by name. Maintenance drugs are not usually street drugs that are readily available. A prescription from a doctor is needed. With gaining information from members we can research and speak to our doctor. Ultimately its up to the doctor! Many of us do our own research on meds, why not have personal stories as a part of our research. Things to share with our doctor. Maybe a course of action they had not thought of. Also maybe after reading someone's post we find the words from them to better describe to our doctor what we are feeling.

And, hush, hush on drugs that get us out of bed does raise a stigma. I will share that I am on 8 maintenance drugs just to function and not be delusional or hallucinate. Then 3 as needed drugs for anxiety, panic, more delusions. This amount is embarrassing but not being able to say the name of drug its not easy to explain why I'm on so many. A few of these drugs I'm embarrassed that I'm on but I'm sure knowing that others are also on that med would help me feel more comfortable, not as alone. Who else do most of us have who could possibly begin to understand us talking about our meds other than professionals? We need peer and community support and I know I can't afford group therapy which would be the only other place to discuss with people in similar situations.

As for street drugs, that's different! That is a choice nor made by a professional. Sharing that "the drug they shoot" is not medical, its lifestyle, and yes, illness! I AM NOT JUDGING, SUBSTANCE ABUSE IS AN ILLNESS, its just that society doesn't always see that. However, a doctor is not involved! Substance abuse is serious and that's where mods need to be on their toes! Are these street drugs being pushed not medically related. There's definitely a difference.

Now on the topic of recreational drugs, there is one that is legal in many places! Places that we, this community, live! To me, its all research reading others medication experiences.

This site should be a safe site to share our medication experiences! And the legal drug that is still too often referred to as a recreational drug is a medication! Its prescribed!

I had no intention for this post to be so long and probably all over the place but, if a goal is to fight against stigma then let us speak!! Let our experience be heard! Let us not feel so alone!

Just my opinion on the topic.

4 replies
User Profile: AffyAvo
AffyAvo OP August 12th, 2018

@EnergySensitive I actually 'shoot a drug' for medical reasons, it's a blood product. I had a very difficult time when I was learning to self-start IVs and did seek support here. Because I couldn't name the drug I got a very difficult time from some mods who would come into the group rooms, not bother to learn what I had been discussing as not there from the beginning and told me to stop talking about illegal drug use.

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User Profile: EnergySensitive
EnergySensitive August 12th, 2018

@AffyAvo

I sincerely apologize. My own ignorance by not thinking about medical injected drugs for illnesses. I in no way was referring to these drugs as shooting up. You're correct, by not being able to state the drug name there could be stigma.

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User Profile: AffyAvo
AffyAvo OP August 12th, 2018

@EnergySensitive That's ok, it just goes to show some of the stigmas that do exist surrounding medications and why naming them here can help reduce some of the stigma.

1 reply
User Profile: EnergySensitive
EnergySensitive August 12th, 2018

@AffyAvo

Yes!!! Exactly! And again, I feel so bad for for my not thought out comment.

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User Profile: Anomalia
Anomalia August 6th, 2018

@AffyAvo @EnergySensitive - you each raise some excellent points!

My understanding of the original purpose of the rule was to avoid people giving harmful medication related advice (or taking harmful medication related advice that was not posted as advice), but it seems to me that there could be a solution that addresses that challenge while also not making all medication names banned here.

For instance, if people were able to talk about the medication names/types, but not dosages, would that help to decrease stigma and allow for discussion of things like side effects while not directly telling someone something only a medical professional should? I would think so.

Or would something to the effect of "medication may be discussed, but we are not medical professionals and no one can tell you what you should take except for your doctor" work, so that we have the ability to remove content saying "You should try this drug!" or "Up your dosage to X!", while still allowing for "There are a range of medications to treat that - X has these common side effects and Y has these, and your doctor can provide more info on what options you might have"?

Just my two cents!

1 reply
User Profile: EnergySensitive
EnergySensitive August 7th, 2018

@Anomalia

I get where you're coming from about dosage or telling someone to up their dose. At the same time only a doctor can up the dose. If someone takes more than prescribed then they will be out because a doctor will not write it and insurance won't cover it.

I feel it is very beneficial to discuss. Compare side affects, response to drug etc... If we can't mention drug names we can't explain things. Example 2 people with MDD, one person feels their meds just aren't cutting it the other says they went through that as well, it could be that same medication we can't mention.

As I said there is quite an age range on this site as well as the medical professionals. A different perception could help both member and doctor. Also remember the side affects. We all already feel alone, let us talk please.

User Profile: AffyAvo
AffyAvo OP August 12th, 2018

@Anomalia Yep, perfectly reasonable!

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User Profile: AffyAvo
AffyAvo OP August 12th, 2018

Some threads which relate to this:

https://www.7cups.com/forum/FamilyFriendsCaregiversSupport_77/TheTeaRoomComeandhaveacuppa_1538/WhatKindsOfTeasToDrinkWhenYouAreSickOrThatWillHelpYouOrForYourHealth_168252/

If foods are being used for medical purposes - how does that differ greatly from medications? It's not the first example of such a topic either.

https://www.7cups.com/forum/HobbyZone_125/WritingHobbies_839/CoffeeorTea_166946/1/

This topic was started by an admin and considering true tea and coffee both naturally contain a drug, it's expected to come up in this topic IMO. I think I counted the drug being named 5 times - no one is modding that.

User Profile: ReadBooksDrinkTea
ReadBooksDrinkTea August 12th, 2018

@AffyAvo I had no idea this was a guideline. Thanks for posting about this and the conversation.

User Profile: Anomalia
Anomalia August 13th, 2018

@Laura @Kate @MonBon @MelAllyouneedislove - wanted to draw your attention to this one :) I know we've discussed before and at the time the decision was no medication names, but it might be time to revisit and think about if there's a way to maintain the goals of the rule while also opening up a bit to decrease stigma (e.g., see my suggestion above on a potential compromise)

1 reply
User Profile: MonBon
MonBon August 13th, 2018

@Anomalia @AffyAvo

I am open to discussing! At the moment, I believe the guideline is phrased so that types of medications (SSRIs, antidepressants, stimulants) are allowed but not specific brands or dosages. There are a lot of situations that make this rule very grey, such as with the threads Affy listed above or with hormone therapy as @RaCat has mentioned before. Alcohol is also a unique situation as we have discussed with @Kate and @Laura before

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User Profile: Kate
Kate August 14th, 2018

I am willing to revist this rule as well. It seems like the purpose is to, of course, not make any medical recommendations or lead anyone into thinking just because a certain medication works for you, that it will work for them too. It seems like something we should open up for conversation again and thoughtfully consider how including medication names may be beneficial to the community as long as we are not speaking about doseages or talking in a way that makes it seem we are making medical recommendations.

2 replies
User Profile: MonBon
MonBon August 14th, 2018

@Kate

Thanks Kate! Looking forward to discussing this soon ^^

User Profile: AffyAvo
AffyAvo OP August 14th, 2018

@Kate Thanks Kate! It's greatly appreciated!

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