The stigma of our illness

Your not a dented generic.. heck I would not want to be a campbells soup can, would be too much stress for me, I like just being a off label can of soup..

You have nothing to prove to anyone but yourself and God, or the God of your understanding.. if the way your "friends" treat you is like you are saying I don't believe that I would consider them friends, true friends love and accept you as you are, dents and all.

Tell them flat out you do not appreciate their jokes, or attitudes and if they wish to continue, then you do not consider them friends at all, find some new people who will love and understand you.

Talk with your therapist about the way you are feeling, they can help you work through this..

The media just shows stuff that they feel that the majority of society wants to see, like those reality shows, can't stand the things myself..their not really reality.. Don't fight to prove who you are, there is nothing to fight about, you are still the same person you were prior to the diagnosis, just more stable now.. you are not the illness you are the same person who happens to have this illness, and because of it, you will gain more empathy towards others who suffer from a illness.. and like you face the ridicule of ignorant people.

Simply put, Piss on them, they not friends.

My mania is kind of running me at the moment, which I can usualy tell manifests through the keyboard. Oh well, I'll indulge it one more time as I wanted to chime in on Stigma of Mental Illness.

I have been a recovering alcoholic for 20 years now as well as BPII which I only got an accurate diagnosis last year. Anyway, guess I've been 'trained' so to speak in not caring too much about who knows about my other disease of alcoholism. I absolutely know it is a disease, an illness rather than any sort of moral or character weakness. This was not always the case with my mental illness.

Last year, when I really hit my emotional bottom and was brought to my knees in pain, I reached out and demanded help. Funny how effective pain can be in getting things done. Anyway, I broke the ice with my doctor and it only got easier from there.

I don't feel I have any obligation whatsoever to have to tell anyone about my mental illness or to have have to explain or convince them in any way. That said, for myself, an important part of my recovery from BPII as well as all my other addictions is to write about it.

When I write, it's as if Itake the stigma out of it - for me. I visualaize my mental illness as a wolf, waiting patiently on a hill top, just waiting for me to slip up, to step away from the pack, and then it will take me down, as I am defenseless. What does slip up mean to me? It means denying my illness to those that could support me, to give me strength and as in any other means off support, I am careful to trust only those that understand or are willing to understand me, without judgement.

My transparency only helps to heal me. It may work opposite for others, but it helps me. And I so agree with you, if the others don't understand or judge me, F----- Em' and the horse they rode in on! I was definetely NOT always so courageous, in fact most of my life I was paralyzed with fear of being judged. Of course the worst judge was myself, Judge, Jury and almost always - executioner. Guess I just woke up MAD one day, mad as hell at my disease and was not going to allow it to destroy me one more minute. I got busy and I stay busy as I can feel that cold breath of the wolf, always on the back of my neck. Most days, I outrun the SOB. Some days it gets me. Today I have tools and today I have faith and hope because I KNOW there is help out there ... BUT ... I have also discovered that ivf no one knows that I am hurting, they cannot help me. Suffering in silence doesn'y work for me thse days. I'm busy, living.

Take care of yourself Carmen. Yopu deserve it. We all do.

Louie R. (uswalker)

Wanna see just how vocal I am about my MENTAL ILLNESS, check out the Bio in my Art Web site below.

I get thousands of hits and hundreds of emails from people regarding my history of mental illness, those suffering in isolation and shame, without a voice and those that love those suffering and feel helpless and lost.

If I hid in the closet and didn't tell anyone about my illness, there would be no opportunity to help others, and I am here to tell you, not only does it help me to fend off the wolf, but it is Sooooo rewarding ... it fills my soul.

They say, God uses broken vessels. I say ... Halleluah, I'm Busted and Proud of IT! I, for one, am proud to have finally broken free from that closet of Mental Illness Stigma. Today I am free and I really don't care (too much) about what others may think of me.

http://rochonsculpture.artspan.com/mbr_bio.php

I don't hide who I am or what I am, by being open with folks I have found that it helps others to know they are not alone..as you know I am sure as alcoholics we all believe we are in this alone, no one understands the pain we go through, same with the bipolar..but thanks to places like this we now know we are not alone in our suffering, will have to check out your site..

Like I am sure you heard in the rooms of AA, I am allowed to say that I am, but I am not allowed to say that you are, I've seen people all over the place, and will not acknowledge where I know them from, sometimes even that I know them, unless they make the move to do so.. I have a friend that attends my church, and we drove her mother in law nuts, because neither one of us would say where we knew the other one from..lol, we just said we had a mutual friend.

Like MM some folks have been met with ridicule and scorn for their illness, my mom is one of those folks who likes to hide things, she about had a heart attack when I told her that I might need to explain my situation at work to my boss, as I was requesting special consideration in my scheduling, being a diabetic, I have read up on the laws concerning illness and our need to disclose the information, by law I don't have to tell anyone about any illness, unless that illness directly affects my ability to do the job, someone that is seizure prone you would not want working a piece of machinery that they could get hurt in if they had a seizure, so I would be obligated to inform my employer of that fact, I can ask for special considerations as long as it doesn't affect the daily operations of the business that much and won't cost the company a small fortune to do. Mom wanted me to say I was mildly depressed, told her that was a lie, and the days of not speaking about mental illness and locking those away that had one were over.. I am not ashamed of who I am... never have been, never will be and like I told her before, I don't care if the devil himself shows up on your door step looking for me, tell him where to find me..

As a bipolar, I require a level work schedule, I can't do all this flip flopping like he was doing to me, working nights one night, and then having to turn around the next day and be in at 8 am, by the time I got home the night before ate supper, as I have to do because of the diabetes, unwound and relaxed, I ended up with 3 hours of hit and miss sleep, not good for a recovering alcoholic/addict with bipolar and diabetes person with sleep apnea, and heart problems..rofl.. I am falling apart in case you can't tell. Although I would have had no problem in disclosing the fact that I am a bipolar, and he already knows I am in recovery, I didn't have too, I just told him I have 5 known illness, 3 of which require a stable work schedule, and 1 of which could affect my ability to do my job, I have hidradenitis also, www.hsusa.org in case you want to read up on it, we also have a hidradenitis group here on this site. It will when in flare cause extreme pain and limit the amount of walking and moving I can do, otherwise my ability to do my job isn't limited.

Because we are "broken" we are more open and caring towards those that also suffer, in a way you could say that we have been blessed to have these illnesses.. by having them and the experience we've had along with them, we are able to reach out and help others with compassion and caring that a person with out it would not be able too.

Anyone who would ridicule and scorn another in my books needs to have the living Sh** beat out of them.. I have no tolerance for that kinda behavior.. I believe in live and let live accept where it causes others pain..

I do love to talk with other AA's ... so much less ice to break and far quicker learning curve. All you had to do was tell me that and I know you, and you know me and you know what I'm talkinng about.

Wish I could say I had 20 years, and I do, but took about 5 vacations in that time. I'd say about 17 years of real sobriety, with 6-7 at the most. In my bio, it explains about my last big bout od depression and relapse. That cross country walk took me almost 3 years to complete. The first 2.5 years, I was sober, but I'm telling you, that last 800 miles up the Northern Calif/Oregon border, drunk, was one tough walk.

Hey, we also have heart stuff in common. I'm the proud recipient of not one, not two, bit 6 stents in my coronary arteries. I am a walking talking heart attack. You know the irony in that ... I purposely wanted to die so badly, to end my pain, that I did everything I could to clog my arteries. I remember the last operation I had, I had never prayed so long and earnestly as I did the night before surgery - praying to God to let me die on that table. And only someone who has been through the pain of emotional illness can could possibly understand, the intense pain, excrucaiating pain that next mornihg in Post Op when I opened my eyes and realized I was still alive. My GOD ... that was one of my lowest lows.

And today, after having been through a lifetime of this crap, NOW I want more than anything to live yet must live with the reality of what my mental ilness has done to my physical body. Oh well, only God knows when he needs me more somewhere else.

That's the really tragic part of obituaries - THEY LIE! They talk about losing their long battle with cancer, or some disease or another but I believe the root cause of many diseases is mental illness. Hey, alcohol is right up there with the leading cause of death as well, but alcohol, for me, was simply a symptom of my disease - my primary, root, disease is and always has been severe depression and didn't even realize until the last couple years, that it was BPII.

Again, better late than never, eh.

Sorry for rambling ... been a manic kind of day. Have had to be off my mania med (Tegretol) for 3 weeks now and I'm a tad bit FRAYED, but holding on. My doc should be back from vacation tomorrow and guess who will be sitting on her door step when she drives in. Sickly MOI.

Bye for now.

Louie R. (uswalker)

My heart issue is with a leaking aortic valve, will have to be replaced sooner or later.. at least my first surgery wasn't the heart, I had my gallbladder out..

There have been many times in sobriety that I have wanted to take some side trips, but couldn't, I made a promise, and I can't break that, not to a human on this planet and not to myself, I made the promise to God, he gave me the peace that I needed and I self committed to rehab.. even in my darkest hours right before the suicide attempt, I never touched a drop.. it's funny now, my baby brother was talking to me, and he called the police to do a wellness check on me as I sounded drunk out of my mind, he never once thought that I had gone off the wagon, he just knew something was wrong.

Why on God's green earth have you had to be off your meds?

I have been on Lamictol for a year now. It is working great and has all along, primarily helping me with depression, but then the mania really popped up. You know, I learned that I'd much rather be in my depression that the mania. I can cope better.

Anyway ...

They have had to try about 6 other meds over the past year. There was always something wrong with each of them. I LOVED Lithium (after I got used to it) but as you probably know, it can effect the Liver. After a couple months and a couple blood tests, sure enough, I was one of the lucky ones and had to get off, and then went to something else, that didn't work and on and on and on.

We eventually found Tegretol, which has worked fine. I got stable for the first time in my life.... almost 4 months. I used to keep a daily mood chart and I got so stable that I stopped doing it all together as all the days were the same, an 8 on a scale of 10.

You are probably also aware of that nasty, life threatening rash that about 1/1000 can get as a side effect of Lamictol AND Tegretol. I knew about it with the Lamictol but didn't for the Tegretol. Anyway, lucky me , again, as I developed that terrible rash over the entire top of my body, my mouth started bleeding in many locations and it was too painful to even tal. It was starting to move into my lungs.

They ER'd me and got me to a really great dermotologist that had to immediately pull one of the two possible drugs. Since I'd only been on Tegretol for about 2 months, they had to start somewhere and that's the one they stopped.

They gave me some really nasty medication (some steroid) to help me to heal, which created a Parkinsons type of shaking. That was fun. Thank God I have a girlfriend that really loves me as when we would go to lunch, I shook so bad, trying to get the sandwhich to my mouth, that I would shake everyting out of the sandwhich, with crap flying all over the table. We laughed about it, the first time. Then I stopped eating in public.

You aren't supposed to get off those drugs cold turkey but they had no choice. That rash, once established past a certain point, goes inside and basically, starts eating you alive, one organ at a time.

So .... now all the rash and side effects are gone, but guess what's back ... My mania. Oh what fun.

My doc wanted me clean, except for thee Lamictol for a few weeks and then we're going to start over again, trial and error unril we can find the right balance. Any suggestions. I've tried a bunch already. She tried the drugged out series (Sseroquel) and I was so STONED out fo my mind, I could barely crawl into bed. That was day one ... Needless to say with my little alcohol allergy, I threw the balance of those pills into the toilet when I came-to in the am.

So, I'm using all my tools, AA, friends, family (I AVOID, as they make me CRAZY), prayer, meditation (NO WAY to slow down enough for that), I write my Good Dog email column every day, I talk with lots of people on 3 sites like this, I write and write and write and write (guess you never would have guessed that) and I simply tell my disease to Go F---k itself if it gets too bad. I actually seperate myself (in my mind) from the disease, as if it were an enemy hell bent on destroying me, and I fight, not allowing it to take a foothold. Of course I can't stop some of the symptoms of t he mania but I manage to harness them into a positive direction. Similar to when I had the shakes so bad, I did harness that when I brished my teeth ... THAT was cool!

Anyway, my doc gets back today and I am calling her in abouyt 28 minutes, when she opens and I WILL be taolking to her about a new med.

I am going to do my research first and get to know all of my options first ... what drugs are available, side effects, drug interactions ... etc. I have learned that I can,m in a few hours on google, learn as much if not MORE than my doc. I bring her stuff all the time that she didn't know about. See, another benefit of the mania - it works great if you point it at Google.

Gotta run, taking mom to the airport shuttle as she and her boy toy are LEAVING FOR 7 WEEKS ... Oh My God, Thank You Lord. Alone-ness for almost two months and I love in a really beautiful house on the ocean with 5 acres. OK, I'm spoiled, so what. I do apprecaite every moment though.

Gotta run. Sorry for the manic reply.

Louie (uswalker)

Post edited by: uswalker, at: 02/07/2008 10:47

I am jealous about the house..lol, I would love to live on the ocean.. Hope your Mom has a good time and you enjoy your quiet time..

Wow, I hope I do not have to go thru this with my medications. I was just diagnosed on Thanksgiving (Yes, actually on Thanksgiving Day because I went into the hospital). So far my meds have been working and I don't have bad side effects. I am on the new anti-psychotic Invega and I am also on Paxil for depression symptoms. I keep hearing stories about how the meds can stop working. That terrifies me to no end because I am on a managed plan and I don't know how easy it would be to change my meds or try new combinations.

How do you know when the pills are becoming less effective? Do you have to get really manic or depressed before you can tell?

~Holly

Post edited by: hcbertsch, at: 02/19/2008 20:41

One thing I have learned is that everyone is different in regards to their med's side effects and effectiveness. What's important is that we keep moving forward, never giving up trying to find the right combo.

For 15 years, I was on Effexor for my diagnosis of Clinical Depression. It worked for many years, somewhat, yet the the diagnosis was wrong and I was not being treated for my mania, which I really wasn't aware that I had a problem with.

It was only a year ago that I was finally diagnosed as BP II and from what I had read (and I read a lot) anti-depressants can actually make BP II worse and that it is treated with mood stabilizers of which there are many.

If you'd like to go to site run by a really great doctor that specializes in BP II, check out this link ...http://www.psycheducation.org/depression/quick% 20summary.htm

I write a little more (kind of tongue and cheek) about my medical path in a diary posting entitled "A Doctors Story." I have cut and pasted it here but hope it's the right address? If not just click on my name (uswalker) and you'll see a list of posts or diary entries? and look up "A Doctors Story".

http://www.mdjunction.com/diary/healing-through-words/ getting-help-a-doctor-story

If you are interested in how BiPolar can effect a persons's entire life, I summarize my mental illness in my art web site Bio ... http://rochonsculpture.artspan.com/mbr_bio.php

Again I welcome you Holly. Sounds like you are on the right path. Keep reaching out and making friends and building support for yourself.

Bye for now

Louie (uswalker)