This is an excerpt from an email that I sent to a group of close friends regarding my struggles with mental illness. It IS long but I have decided to share it because I have had so many positive responses come out of it that I felt that it was worth opening up to a larger audience - one of my (dear, sweet) friends even suggested that I write a book out of it!!! While I don't really think people would read any such volume, various friends have pointed out that some of what I have written is not just helpful for understanding me... But others in their lives that struggle with mental illness... So here it is - actually, it is not really doctored that much at all, so if you dont have the time to read it now, I suggest that you come back later... As it is quite long...
Hey there,
I have thought long and hard about this and I would like to ask you for a special favor.
After almost a year now of really healthy positive steps forward, I am confident that the preceding three years of emotional instability are behind me now and I am breaking free of the grasp of the black dog.
Which has given me alot to mull over. I have straightened out most areas of my life or am still putting alot of hard yards into rebuilding aspects and areas if my life that have suffered dramatically over the last 15-20 years.
One of the biggest breakthroughs that has come about in the past year is the overturning of the Bipolar diagnosis which has come from the recognition that I was misdiagnosed 13 years ago due to the stress and grief related to the abortion and a lack of long term observation, corroborating evidence and a total absence of diagnostic review.
The diagnosis that has now been passed down and has its roots even in early adolescence is Major Depression with Psychotic Features. The Psychotic Features element and the recent Borderline Personality Disorder diagnosis are currently under review due to certain concerns but this observation/review process may take several years to have any real certainty. The longest that I have gone in "remission" is 3-4 years so it could be awhile yet before a firm decision is made relating to these concerns. In addition, there is also a possibility that I have some type of anxiety and/or panic disorder at play as well, and this again needs time, observation and review.
So why am I telling you all of this?
When you have been in the mental health "system" for as long as I have, you will most probably switch off when you hear the terms "recovery planning" "wellness planning" or "care plan". If you're like me, you will have no idea what you can do to help yourself get better and usually these things are shoved under your nose while in hospital when you are at the most acute phase of your "illness".
Questions like "Things I do well"; "Things I can do to help me stay well"; "Things that stress me"; "My early warning signs are..."; "If I become unwell, I would like the following to happen..."; usually invoke a response in me of - "Geez! I dunno! If I knew all of these flipping' things (or words to that effect), I wouldn't be in hospital in the first place!"
But in light of my recent wellness and personal successes, in response to finally getting the RIGHT medication and levels, and in the hope of this second "remission" phase I am possibly moving into, I have learned so much! And I have been working slowly and carefully on a wellness plan and recovery strategy that adequately answers all of those questions and more.
I know now that remission is not some magical healing that God wants to do in my life by hunting around in my soul searching around for some buried, forgotten sin that Jesus already forgave when I accepted him into my life and received healing for my heart and soul in light of what Jesus gave me at the cross.
I know now that the key to remaining well is understanding myself, identifying my stressors and triggers, and placing strategies into effect that will help me manage stress, depression, anxiety and paranoia in
my life. Because all of these things really rock me.
So if you realize that I have a warped view of myself, a situation, an experience or especially a religious idea, please point out the truth in the situation. But also remember that I may just be verbalizing something that I know is just one facet of the whole picture and if you talk to me 10 minutes later, I may mentally have moved miles beyond that point. Part of having to rediscover who I truly am is to challenge everything in my world to check that my internal values and assumptions are mine or if they are someone else's that I have taken on over the years and not questioned in order to please someone else.
If I am depressed, help me find something to hope for; If I am anxious or overwhelmed, please just hug me and remind me that the feelings will pass and I CAN get through it; If I am paranoid, please point out where I might have missed some perspective; If I am stressed, please be prepared to listen to my waffle and withhold opinion because chances are that I will talk myself round if given half a chance to talk; If there is confrontation, please respect my need to remove myself from the room but don't assume that the conversation is over - I simply need to remove myself from the heat for long enough to get my thoughts together and to calm down; If I ask questions please understand it is only because there is an issue arising in me that I haven't challenged myself on and that I need to work through.
I isolate myself whenever I am not coping with life and when I am not coping, I will not reach out to others. I learning now that I really NEED my friends at these times more than ever. And I need to give you the chance to understand my symptoms so that if you see or think that I am not coping, that NOW is the time to reach out and make contact - because if I get to this point in my depression, I cannot clearly identify my own needs or communicate them.
Sadly, because I heavily restricted my support network to a handful of people several years ago, this immediate network is now all but burnt out from the rollercoaster of suicide attempts and hospital addmissions and maladaptive behavior and non-responsive drug therapy due to misdiagnosis.
So now I am taking a little more risk and widening the circle of support to take the pressure off the ones I have not held but smothered so close to my heart.
All of you on this list I have loved and considered dear and close friends for a long time - for some of you, we only keep touch via email these days, but I still love you with my whole heart and trust you with this next stage of my journey.
I share these things with you not to make excuses for my behavior but to help you understand me a little better because the reality is that "me" is quite complex... It's not that I have unrepentant sin in my life, am manifesting bad spiritual fruit or am need of a deeper spiritual healing, it is the reality of my illness, coupled with my responses to it and stigma over the years which I am now learning to manage. Unfortunately a physical chronic illness simply needs careful medical management but a chronic mental illness requires not just medical support but emotional support as well.
I do not expect you to handle me with kid gloves - and in fact I really hate the sensation that I am being "handled". I am a big girl and I wear bid girl panties. If you have a problem with me, I expect you to come directly to me and tell me. I cannot try to read between the lines any more - with my issues relating to paranoia, to expect me to pick up on hints or word play or body language alone is really just inviting trouble, especially for me.
But please, if you do feel that you need to come to me with an issue, do so in love. And if I respond negatively, just leave it at that. Often I need to go away and process it in relation to my internal world to find the right response. Whatever you do, if I have responded negatively, don't labour your point or expand it or explain, because I really don't cope well with confrontation, actual or perceived. It is not that I am overly sensitive, it us just that for years I have not had the words to describe my emotions and responses, and so in deference to having a constructive conversation about an issue of contention, I have simply responded through my mental limitations with intense emotional reactions.
And in addition, please refrain from trying to diagnose me or suggest alternative diagnoses, treatments or medications. If I want your help or advice on any if this, I will ask you - and please especially refrain from giving me self-help books or websites. I have wasted so many hours of my life devouring totally irrelevant information because I have hoped that "this book (etc.) might help me as much as it did "Cara". There is a reason that I consult with three (soon to be four) medical and mental health practitioners over the course of a month. It is their diagnosis, treatment and management strategies that I need and respect. Not Joyce Meyer's or even The Demtel man's.
My biggest fear however (and hence the "special favour" that I asked you to consider at the beginning of this email) - is that I relapse to the point of having to recommence anti-psychotics, or to the point of hospitalisation. And based on my history with medication and hospital, I have had to reflect on what I would really like to help me through this time - because mentally ill individuals need their support mechanisms to swing into overtime most when the are becoming acute in their illness because at this point they can become emotionally vulnerable, fragile and helpless. This is the one and only instance where you DO treat me with kid gloves.
So here is my request.
I would like you to consider to agreeing to me giving your contact details to someone who I will assign as my recovery manager - I have yet to assign this person. While I am "acute" they will be responsible for managing my finances, communicating with Steve as I instruct, responding to urgent emails and txts (especially if I am in a public hospital), passing on positive, genuine emails that I may not be able to access whilst in hospital and coordinating the "phone roster".
The phone roster will work like this. If you agree to passing on your details, you will be linked into a group email that lets you know that I have moved into an acute phase of my illness and that it is time to commit to six weeks (in the advent of a reintroduction of anti-psychotics and home management) or a six week + the length of a hospital admission commitment (a maximum of three months). During this time you will be asked to go on a roster for making a short phone call to me on a semi-regular basis. The frequency of the commitment will depend on the number of respondents. If there are seven, then it will be a weekly commitment, if there are fourteen, then a fortnightly commitment and so on...
This will create an eventuality for me of having a conversation with the people who are most important to me, hopefully every day. It is not uncommon to feel isolated from the world, especially while in a locked psych ward or a private Sydney-based hospital. I have in the past gone for days without talking to anyone important to me. And I have gone for almost a week without a visit, which is extremely hard when Sydney-based inpatients have their kids (especially their kids) visit them every day. Your world becomes a never-ending cycle of nurses, doctors, inpatients, medication, meals and sleeping. And I am not exaggerating!
Why am I asking you this? I have had a series of conversations recently where the struggle has been pointed out to me that people who are close to me have felt at a loss as to how to help me when they see me struggling and this has prompted me to think long and hard. I have wanted to come up with a way of alleviating your struggles and uncertainty as well as create a context where I can arrest the thoughts that nobody really loves me, I really am worthless and people only care for me because to they would feel guilty if they walked away from me now. They're being nice to protect themselves.
So this is why I am asking you to consider the phone roster. This is one significant, practical way that you CAN help me!
Some things to consider...
*I will most likely be negative. Please be patient with me, listen to me and try to find something positive to point out but AVOID AT ALL COSTS platitudes, especially religious/biblical ones ie God's got a reason for you to go through this. God's got something planned for you. Avoid pointing out the bigger picture, because it will either be beyond my present capacities or I will obsess with patterns, co-incidences and "joining the dots"
* Don't try to solve my problems or make suggestions. Acute illness is not the time for either of these things. Just listen and love.
* Don't tell me when you plan to ring next. There is very little in a psych ward to distract, divert, engage you and to fill your day with. If you cannot make the call you intend to, it could make things worse for me as the anticipation will occupy my mind all day. Best to keep it as a surprise. ;)
* Remember that in this state, there is very little that I will say that is directed at you personally. In this place, there is definitely a jumble of thoughts but a lack of discretion on communication. I may think that your entire church has judged me or that my family is having secret conferences about me behind my back and I may believe that passionately. It's not an indication of how I really feel or what I truly believe, it is an inability to sift through thought processes objectively and challenge paranoid thoughts.
* If I do talk too much or the intensity of what I am saying is too much to handle, please TELL ME. Don't just look for a convenient excuse to hang up. When I am in these vulnerable emotional states, and abrupt end to a phone call can be far worse for me than saying "Fi, I am really not coping with this, can we talk about something else? Otherwise I think that I will have to go."
* If you do feel that it is necessary to end the call prematurely, please make sure that it is not the last time you call. I notice when people suddenly drop out of contact, and I will end up obsessing over it. It is better to make another phone call or two and then drop contact if you find that it is too much. That way I will be thrown off the scent and will assume that your life just got busy.
* If you call and I do not answer or (in the public wards) you get hung up on (yep, quite common) PLEASE try to ring back and persevere. There is nothing worse than being told by another inpatient that someone called for you and to then spend the rest of the day wondering who it was and whether they will call back.
*Please DO tell me about YOUR life, experiences, kids, struggles. It is SO good for me to hear these things. Apart from it being a welcome distraction, it takes me out of myself and reminds me that there is a world out there and that I have friends and life waiting for me once I get back on track.
* Remember that this is a temporary reality for me. What you are hearing is not the real Fi but rather a distortion of the real Fi. Please reserve judgement until you can see the real Fi re-emerging. Sometimes I have been known to say things that are completely uncharacteristic for me and contrary to what I am actually thinking or feeling and only days later elephant-brain Fi had absolutely no recollection of saying those things at all.
* Please remember that recovery is a realistic reality not something to just hope for. And given that I am learning more about myself each time this happens, if I make sure that I am properly supported now, my recovery time will likely be much quicker.
* Please be patient, especially in the first month or so. Anti-psychotics and sedatives can RADICALLY change your responses and communication. If what I am saying doesn't make sense, please smile and wave and don't try to interpret. In addition EXPECT DELAYS. My processing speed may be quite slow and my speech may be slurred.
* Please try to avoid saying "x told me that you were..." or "y told me that you said that". During these times of illness in particular, I can become quite paranoid about others talking about me. Part of this is my fear of stigma and misunderstanding and part of this is news getting back to Steve or the kids via Facebook etc. that I haven't shared with them directly for my own personal reasons. I have no trouble with any of you talking about me amongst yourselves because I trust you all and I wouldn't have asked you to become part of my support circle if I felt that you were going to mishandle this situation, information and my trust. But in these times - my rational/logical mind has flown the coop and panic sets in. So please avoid letting me know that you've spoken to anyone.
* Please DO NOT include me on your church prayer chain or in your corporate prayer times. The only church I have given express permission to pray for me corporately is New Future New Hope and that is only in our core home group and with Lee's discretion. If you wish to ask your prayer triplet, mentor, pastor or home group to pray, this is fine as long as you stipulate that this information is strictly CONFIDENTIAL. Given that I am working towards becoming a mental health professional, I feel that it is necessary to limit who knows and who prays. There is nothing constructive about sitting in your psychologist's office and wondering whether it was true what you heard 18 months ago from a concerned lady at your church about your objective, capable, studied and experienced mental health professional being a nutcase and having to be committed to hospital. I am aware that THIS statement may sound quite paranoid in itself, but sadly I have experienced people's assumptions, labeling and stigma far too many times to want to continue opening myself up to uninformed scrutiny and people passing on doctored "prayer updates". It seriously can become as bad as Chinese Whispers. Again, I have seen it far too many times.
* Please don't assume that I will just call you if I want to chat. If I am in a public facility then I need 1) change for the public phone and 2) prayer that the last inpatient to use the phone has not become violent during their phone call and ripped the only phone out of the wall (yep, have seen it happen). So there are natural obstacles to me calling you. And if I am in a private ward and have my phone - there will be a temporary barr put on my phone so that in my mental state of not caring about long-term consequences, I cannot run up an exorbitant phone bill. I will still have the internet so Skype and Facebook will be good alternative chat forums, however please do not look upon this as an alternative substitute to a phone call. Hearing the voice of a trusted friend can be like a mood stabilizer for the soul.
* If I am in a private ward, you will be provided with a landline phone - so you have the option of calling the landline if it works out cheaper for you than calling my mobile. In the public ward, it is generally a landline, but it is the inpatient common phone. So be prepared for ANYTHING when you call it - people are in all kinds of different mental states in a psych ward!
So here I come to the end of my ramble. Thanks for hearing me out. Please take your time in considering whether this is something that you would like the opportunity to contribute to. If there is ANY hint of obligation or hesitation then please send me an email with "I Decline" in the subject line. You do not need to tell me in the body of the text why you ate declining unless you really want to know. If this is your response, I am totally OK with that. I just want you to know that you are very important to me and hopefully share a little bit more of what goes on inside my head when I am I'll - because historically, I have always been bad at that.
If you are uncertain, then reply with "Need Clarification" in the subject line and any of your questions, concerns in the body of the email.
If you want to accept, reply with "I accept" in the subject line and yours reliable email addy and most recent contact number (just in case my records have dated!!)
I love you all and I am so blessed to have you all as friends and family!
Fi
--
I think I'll try defying gravity..
