What advocacy groups exist for BPD?

[sisbpd]

Hi Everyone,

You may have read my posts. I lost my 27 yo BPD sibling earlier this week. It has been tremendously heartwrenching and it seems she passed under bad circumstances as well, which means the police have been involved.

However, what I am writing here to ask about is what advocacy groups exist for BPD? My family and I have been through the wringer for 16 years trying to get my sister the help she needed. Nobody in the pediatric world knew what to do with her, and in the adult world she was able to refuse treatment. Then, even when she wanted treatment as an adult, it was rarely available or very short. Every doctor who saw my sister said that she needed long-term care in-patient. She was even willing to do it a few times.

In our area, involuntary commitments typically only occur when people are injuring other people. My sister wasn't specifically violent toward others, but she was violent toward herself and was a danger to herself on a regular basis, with suicidal ideations, hearing voices, using eating disorder symptoms, and using drugs, which caused her untimely death.

I do not want my little sister to have died in vain and I do not want anyone else to experience the roller coaster we did when all we wanted was for my sister to get the treatment she desperately needed. My parents spent 6 figures when they were financially able on my sister's care (even with having good health insurance). This simply isn't doable for most families. The system is broken. If you know of any groups trying to fix it, please leave me a reply here so I can reach out and try my hardest to channel my sister's energy in a positive way.

[DaddyBear77]

sisBPD, I am so sorry for your loss.

No words can express how difficult it is to lose a loved one like this. My thoughts go out to you and your family.

I can offer you this list of organizations that support BPD in various ways:
https://www.borderlinepersonalitydisorder.com/organizations-programs/

Others may have some specific recommendations, and I sincerely hope you can find a way to channel your sister's energy, and all the love and energy you and your family have given as well.

~DaddyBear77

[Mutt]

His sisBPD,

I’m sorry for your loss. I can’t offer information on advice groups, i live in a different country than you likely. I just wanted to suggest volunteer is a way to channel your sisters energy. I volunteer here in the hopes that it helps future generations.

[wendydarling]

Dear sisBPD

My deepest condolences to you and your parents. I've trod your path shouting out for help to gain access to medical help when my 29DD hit crisis in 2015, such an isolating and scary place to be.

I managed to gain my DD the help by the grace of god. Through her gentle stepped recovery to remission she set up her own BPD twitter, reaching out to others, advocating for BPD sufferers.  

Her first tweet 'Borderline Personality Disorder is one of the most misunderstood, stigmatised & complex mental health diagnoses'.  

Second tweet to the thread 'One could write pages relating to the condition BPD and a layman’s understanding would still be incomplete. For this reason I am going to try and keep it short, simple and concise as I can and explain to you what BPD is to me'.

I dedicate to you and your parents my daughter's advocacy work in memory of your sister, of course it's not mine to give, it's my daughters to give to your sister, and she is, how best she knows to advocate for her peers, helping others speak out, reach out for help. I hope this brings you some comfort your dear sister and your parents loving child is never forgotten.

WDx  

[ijustwantpeace]

I am very sorry for your loss, and I wish there was better mental health care in this country too.  Not just for the mentally ill, but for their families as well.

I strongly believe that dysfunction in general is becoming and epidemic.

It sounds selfish, but if you really want to fix the problem of BPD in this country being solid, and strong is probably the best thing you can do.

Dysfunction breeds dysfunction.

Even though I am not personality disordered I was raised by a disordered individual and learned many of her bad habits, and controlling behaviors.

My life for over 40 years was complete garbage, and I even lost my dream job because I had beliefs, bad habits,  and behaviors that cost me everything.

It was not until I got around strong solid people in a Bible study that I could see how healthy people and marriages worked.

I saw people respecting each other's boundaries and acting in a kind manner that I had never seen before.

This gave me hope.

That hope was fuel I needed to do the hard work on myself to correct these bad behaviors and have success in life.

I was very fortunate to have the support I was given.  Maybe you can be a good example of what is possible for others to follow?

One thing to be aware when starting a group is that people have to be ready.  I mean broken and ground to dust ready for change.  So desperate for change that that are willing to confront a bunch of scary truth, and harsh reality.

The sad part about BPD is that it is a defense mechanism against truth and reality making it very hard for them to get help.

I believe only when the pain of their current situations outweighs facing reality and their huge pile of fears that change is possible.