As I have traveled on this journey the last 14 months, I have been fairly reflective this week. Sometimes its helpful to remember where we started before we examine where we are.
My life, my wife, my kids and family these are all things worth fighting for. For me to be the man I truly believe God has called me to be requires a lot of faith as his time and my time don't apparently intersect :-)
So...what is the fight like? We have heard from many caretakers, professionals and news media. Before I can delve into what its been like for me to fight for 44 years and more recently 14 months. There are certain inherent issues to address. These can prevent or delay "getting better" though that very phrase has yet to be defined to my liking.
1. Stigma- Mental Health is the single highest under-diagnosed illness or not diagnosed...of any kind. In addition it deals with a form of brain damage or altering the normal though process. Insurances often cover a limited amount of visits. There is rarely no copay required, meaning a higher out of pocket...for the poorest that need the most help. I imagine many of you reading this blog have never experienced the decision of making a $5 copay or buying a carton of milk. I had someone ask me once, a Resident, what will take? A month, two? Again it immediately puts the perceived "fault" on the patient. Your not working hard enough, etc....
Anyone that reads my blog can say what they want but I would defy anyone saying I haven't worked my tail off this last year.
2. Treatment- As mentioned above treatment options can be restrictive and limited. Many therapists only work days and if they have a rare moment in the evening those fill quick. Now you must arrange through your boss, or worse HR to be gone every "Wed from 1-3" if this was for Chemo there would be no questions asked. In 2011 I threw an HR director out of my office for sharing with me that a troubled employee had been "abused by a male" and would be prone to overreact toward any male. This really is also stigma but it interferes with treatment as well. There is some documented success with DBT (Dialectical Behavior Therapy) Because its had some limited success it has become the "treatment of the moment." Research will show you, between professionals, its split. Most will say it should be part of treatment. I find some parts of it very useful...others not as much. The main point I have advocated is for individualized treatment plans. If we focus too much on "one" treatment it offers no real hope for those it doesn't work for.
3. Caring and Validation. This is a tricky one. Validation of emotions is very important but it doesn't mean the behavior should necessarily be excused. But we all struggle with validation of who we are, how we fit in.
I have used an acronym of CVA
Access to quality services
These are all areas our society fails miserably at. We are so into the social media news of the moment that each story is so magnified that important stories go on the back burner.
It would be very shallow for me to pretend the above "CVA" is the answer. I don't think any "one" thing is the answer. Even in that knowledge its still very hard for me to maintain my emotions when I feel threatened, abandoned (Real or perceived) or that I am being judged (Harshly in my mind)
During this time of discovering who I really am I also have come to some certain things I believe strongly in.
1. "I hate you don't leave me" probably describes BPD as plainly as anything. There are some outstanding publications on BPD...ranging from Support people to those diagnosed. As there are 8-9 criteria and you need to meet 4-5 the combinations are endless. Part of why I preach individualized treatment plans.
2. Help comes from many, many different areas. I believe God puts the right people in your life at the right time. Project 375 is such an organization. Emily Thieme is such a person as was my first therapist Jess.
3. We need help but what we really need...is to be heard. Talk to us. No one talks to us only about us. How can you learn if you can't create a safe environment. Most of us know we struggle, at least those of us that have sought help. Talk to us, there those of us that will try to be the voice for others.
4. God is always the answer. This does not mean that he hasn't put people with skills in our lives but it doesn't guarantee we wont struggle. I believe God draws us closer to him in these times.
5. Even in my darkest hour my voice can help others. This is hard for me because this blog really puts it all out there. The mood swings, the darkness, depression and feeling victimized.
6. Please don't ask me Why? Just say, "Hey I understand your hurting, I may not fully understand why but I don't need to because I want you to know I am there for you" This is a very lonely disease.
7. There is a difference between making a living helping people versus making money off of people, especially the poorest. May your conscience be your guide.
8. Faith and hope are all I have. It's what gets me through most days.
9. I will get better OR I will be able to manage my symptoms better. Don't know how long that will take but I will get there.
10. As much support as I have...it hurts me deeply to imagine what others without that support go through.
There's more lol. Read the blog :-)
mycounterpane.com is a wonderful place to post your mood, with or without words, a pic or a video. They are in conjunction with Project 375. Please check it out
Just know....I do take responsibility for my life. I do wish I had been diagnosed before age 47, but I can't control that. All I can do is work on being the face of "me" and that is someone with BPD that won't stop fighting
I will close with a video. Many of my posts do this and this is one I have used often. But it is a song that gives me hope.