It goes along with the discussions we've been having lately, so I wanted to share.
Last night at a support group meeting, a father and his young adult son came. I didn't recognize them, it was their first meeting. The son had been in the hospital, was just diagnosed with bipolar disorder, and is currently in partial treatment. The father was doing everything he could do for his boy. The father was so hopeful that they'd found the right med combination, and his son would be cured. We find out the boy had been only a week on medication.
It's heartbreaking when you know they're going to eventually realize a week's worth of medication tells you nothing, that it may be several years before medication is correct. And that bipolar disorder is, for most of us, a life-long condition. A few tried to break it to them, but the father was so hopeful it just wasn't sinking in. I hope they continue to work with it, and that the boy doesn't give up hope. They were both so overwhelmed.
Friday, December 28, 2007
At A Support Meeting...
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17 comments:
I feel terrible because not so long ago I found a web page of a father whose daughter was newly diagnosed and still hospitalized. He was absolutely freaking out about the meds, the potential side effects, and he was so determined that he would just improve what he was doing and that would make her ok. She was saying she was better after one dose of Seroquel so surely she was, and the hospital had to be wrong when they suggested she was in a place she'd be pretty manipulative. It was so sad.
I tried to gently tell him that if you are bipolar the meds feel a lot better than you'd think, that the side effects listed won't all happen to everyone (even though they aren't pleasant for any of us), etc.
I think I scared him off because his blog disappeared quickly.
I feel horrible about that and hope his daughter and he are now doing well.
I have a hard time with this post. bipolar does not have to be what you seem to imply it inevitably is. The reason we're so bad off is because everyone is so doom and gloom and no one tells us we can recover. What frightens me is that so many people refuse to believe we can recover. Why so pessimistic? If you look for the recovery stories they are out there--quite plentiful. Why stay in the dark ugly sick for life paradigm. There is hope for real life and recovery. I find this extremely distressing....it is what kept me sick and in hell for 20 years. I finally have hope for a real life now when I opened up to the belief in myself, my body, my soul and my choices. We can make empowering choices--we can heal! I'm glad you didn't dampen these poor people's spirits. Maybe they'll run into someone who actually gives them the hope they deserve.
Gianna wrote "Why so pessimistic?". I have to go along with her line of thinking with balance added. Relapses will be likely with mental illness, but it is better to look at the three months/year of good health, than focusing and dwelling on a week of "mental illness". Letting the "mental illness" define your life/who you are is wrong.
JM - it sounds like the father is struggling to the point that he may be unable to provide the support she needs. That would be sad.
Gianna - I understand your point of view. But you have to admit - for someone who has just been released from the hospital and is still under their care part-time, they are going to have a significant recovery period. I don't think anyone would advocate a med-free recovery after this scenario. And it is likely that it will take some time to tweak the medication for this individual. What would be a reasonable amount of time for him to spend on meds? 6 months? 1 year? 2 years? It depends on the individual. We discussed before that bipolar disorder is a lifetime condition, you believe that a person can take control of their lives and live symptom-free. I don't argue this is possible for many. But do you truly feel this is possible for all?
Nobody was trying to take away their hope, quite the opposite. But to believe in 2 weeks that he'll be cured would be counterproductive. They need to know that it may take some time before his medication is right. That it is possible to find the balance that will handle his symptoms, yet allow his personality to shine through.
Mark - I agree with you. But when you have a family looking for answers after a week in a psych ward it's hard for them to see the positives. If they continue attending any support group they'll find the hopefulness.
I like your thoughts on this. There is such a tendency to view bipolar disorder treatments in a bipolar way. One pole or the other. It's refreshing to find someone who admits that relapses are possible, yet maintains a positive frame of mind. Thanks for this comment.
It is also not fair to paint the picture that things are necessarily going to be good. In the 5 1/2 years I have lived with this I've had a grand total of 6 weeks that I wasn't heavily cycling. Two of those weeks are this week and last week. The other four were last August and were immediately followed by 4 months of disability leave from a mania that appeared more or less overnight.
When I was diagnosed the doctor (who is well-known in the BP world) told me that at this point medicine would not be able to grant me a "cure", that until new meds were found I would continue to rapid cycle. But then he told me about the hope there was, hope that the cycling wouldn't be so out of control. Hope that I could learn in counseling to control the behaviors. Hope my life wouldn't hurt. Hope I could keep working. At that point he said it was already a miracle (his word) that I'd earned a master's and was working currently.
The goal has always to get me stabilized, then hopefully to get me on reasonable med doses. For a long time a VNS was in the pipe dreams; I don't know about that now.
Prior to diagnosis most of what I had read (and I read EVERYTHING trying to prove I didn't have this) indicated bipolar would come and go. I am very glad that I've been treated by people who were realistic that this may not be the truth. It took a long time for me to understand how far out on the severe end I really am. Even my blog, which is going to be 2 years old in 2 weeks, bears the marks of over-optomism.
It is important for people to know that just as some people have one episode and then never again, it can also be really bad, and that most of us fall in-between. It makes it too easy otherwise to fall into the trap I feel into in the spring of 2006 where I was out of control and unable to see it because I was so focused on the hopefulness. I was so incredibly hopeful that my brand spanking new-to-me therapist didn't really see how sick I was for a few weeks which lost me some valuable time.
I'm not saying this well. I'm just saying that when someone is diagnosed I think they need a very full range of "it can be very good" but also they need to understand the bad possibilities. When you are newly diagnosed and believe you should be getting better any minute because you are taking your lithium and isn't not taking meds what causes episodes, you really need to understand it can be really bad even when you've done nothing wrong.
the time to go med free is before you get on them! meds can make one worse.
see here
Now I know that's schizophrenia but I'm learning more and more that it happens with all mental health issues. It's best to start healthy alternatives from the start before the meds make you permanently sick. I'm in the process of healing and coming off meds after 20 years. I only wish I knew what I know now when I was first diagnosed. I would have lived a healthy life without toxic chemicals.
I honestly don't know and can't know if "everyone" can heal. But I do believe that many many people and probably a majority of people could if they chose to commit to alternatives. That is just what I believe and I've seen so many people recover now and had so many people share their recovery stories with me. People just like me that were written off to be sick for the rest of their lives healthy and robust and stable now.
Shouldn't we give people the chance. Shouldn't research monies be spent on healthy alternatives that work rather than toxic chemicals which sometimes relieve some symptoms but often not and can kill you?
Big pharma is in control.
Gianna-
We do have choices. To take meds is one of them and I'm not sure why there should be such hostility directed at those who choose this or those who provide them. Yes, it is the most common way, but for me and for many it is a CHOICE. I've tried alternatives to some extent; they don't work for me.
Other alternative treatments are not a possiblity for everyone due to other factors. I live far from even psychiatrists, much less alternative practioners. I am not to try anything like massage, accupuncture, etc. because I hate being touched.
I think it is one thing to point out that different ideas are out there, but it is not fair to totally put down and dismiss something that WORKS for so many of us. You choose your way but let me choose mine.
Just Me,
I'm glad you know you have choices. The problem is not everyone does and lots of people are not given choices. That is where the problem lies. I have no problem with the choice you've made.
I just want everyone to know there is choice. And most of us simply do not know. I did not know for far too long and I suffered for it. I was drugged into a zombie and it was completely unnecessary.
Honestly I have no issue with you or anyone who freely chooses, though I think debate is healthy for the soul.
I couldn't agree more with Gianna - debate is healthy for the soul.
This exchange has been both informative and respectful. Thanks to all for sharing their opinions, and I hope everyone feels the participants have been respectful of each other's beliefs.
More thoughts? Keep 'em coming.
I think that it is a personal responsibility to find out if there are different treatments out there that one wants to try. If someone isn't able/willing to take the steps to find what is available to them then they probably can't manage the level of responsibility. SOrt of like I'm open with my doctor that I can't manage more than 2 doses of meds/day without a lot of forgetting.
I think there is also a place where people are just too sick to decide some things, and because alternative treatments require a lot of dedication from the patient meds are best in those cases. I saw this a lot when I worked with longterm institutionalized psych patients. I even introduced some techniques to the facility, but they had to be assisted by staff and only certain staff would do it.
Just one more way this isn't easy....
Being that I've been inside state institutions, as a mother to my daughter, I can safely say that the patients are maintained via psychotropic drugs, often forced injections to keep them quiet, and there is no possible way for someone locked up without choices to MAKE a choice. There are no social workers or therapists or advocates to help patients get out of the "long term" facility, and one word to remember is that it an institution, a long term dumping ground and a hopeless place to reside. There is the real reason why long term patients inside of those places cannot "help themselves". Because they are there against their will.
Of course we all have med stories and yes it's good to share. I take em and Ive seen bad fall out from bad doctors forcing medications on people they have simply written off--and there is where all hope is lost.
I won a court battle to prevent my daughter from being long termed at the state institution, because I defied the doctors opinion that she had a "poor prognosis" and "no hope".
IF he had won his discharge plan, she would have been locked away and over-medicated without option of choice. Inside psych wards it is mandatory medication treatments, period.
She is not locked up, she is free, and participating in life. It may not be perfect but it beats the heck outta that doctor's plan.
She is going to be 20 years old tomorrow. And she can eat cake and pet her dog. On meds, yes, but no hope? hah!
Parents looking for comfort in a trying time is okay, and I think that what Gianna and Mark wanted to high light, is their personal success off of medications, and understanding both sides to the story, without judging other peoples choices.
As long as we are free to choose, that is the ultimate goal. Being that Mark and Gianna have been patients inside a psych ward, they know what I do, they are hell. Once out, your life becomes fear of returning.
IF the medications worked and were the best choice for long term patients--we would have empty institutions. Until that day happens we have a lot of work to do taking care of mental wellness.
Sorry this was long, and hopefully not offensive.
"bipolar disorder is, for most of us, a life-long condition. "
I will argue this right to my grave. Once you have it, you always have it; it doesn't matter how you got it.
Once the brain is subjected to bipolar it is with you forever. Its a known fact. Its in the books, in the research, and even my shrink (in his 70's) believes this to be true.
Thanks for your post about me. I truly appreciate the support :)
I'd like anyone reading this to know they're reading the words and thoughts of some people who have few equals in terms of knowledge and first-hand experience. This is a great exchange.
Stephany - No offense taken on my end.
While I don't really see the negativity in the original post, this discussion has taken on a life of it's own, and I'm glad it has. I may split this discussion into another one in the near future.
Jon's right. This has been one of the best, most respectful discussions I've ever been in with a topic that is so painful. It's given me a ton to think about.
Thanks
Dream writer - I'm glad you're OK, you had us worried. Thanks for stopping by and sharing your opinion. Yours is an opinion shared by many.
I don't know, it might be better to go into things with that kind of attitude and slowly be brought down than to have all hope crushed and then have to build up.
Also, plenty of hospitals are horrible, and instead of waiting for drugs to work, they just pound in harder, heavier drugs in greater amounts for their convenience, and I do think that people with parents like that pushing for them end up getting better treatment than those who accept everything doctors say. If I weren't me, I sure hope I would have someone who loved me pushing like that.
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