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B P on December 29, 2010

Ken, I totally understand where you are coming from.  The saddest part for me is that friends DO melt away -- even Christian friends.  It hurts MOST when your Christian friends ignore you or quit contacting you....  THEY are the ones who should be the best about caring -- Christians should want to care like Jesus did.  Maybe I'm wrong, but I guess I expect "more" from my Christian friends than non-Christian friends.  Especially those who have been Christians a LONG time. A person with a disability can become a non-priority because unless your friends also HAVE a disability, very few people truly "get" how we feel.  They also don't understand that when they "melt away" from us, it just makes us feel less needed and less loved.  Less worthy -- like there IS something "wrong with us" and they are supposedly "normal."  They don't realize our hearts can be broken probably easier than people without disabilities -- and that this "melting away" hurts us deeply.  People don't THINK about what their decisions or comments can do to us.  In my case at least, my self-esteem and emotions are very fragile.  Sometimes the church doesn't only think you are not NEEDED, but some individuals at least believe that you are NOT CAPABLE. 

I feel totally for you regarding your last statement.  "Imagine never being able to make the standard after you were there before."  I have mental health issues and a movement disorder -- I used to be able to accomplish anything and everything.  I had tons of friends and was very social.  I had a complicated high level job and was very good at everything.  I was a leader at church and at work.  Learning new things (like technology/software) came so easy!  I learned it first, and then taught others.  I could play piano/keyboard/guitar and have changes made up to the last second before church started with no problems.  I struggle with last minute changes now.  I have to run extra copies so I can play left to right without having to turn back pages for any repeats.  At work and at church, I was the one everyone else turned to for advice and help -- and now no one even thinks of asking me.  People DO just fade away -- people who are supposedly your "friends" (and are Christians/members of the same church) but who don't care enough to even return a phone call or e-mail. 

I understand about not being able to talk with your family as well.  Half the time I feel like I am pretending with my family.  Disabilities are hard for the entire family -- that IS true, and ALL of us need love and support.  But, for those of us with certain disabilities at least, not even our closest family members "get it."  In fact, they sometimes do the exact opposite of what WOULD help and I can't talk to them.  I know what you mean about ADA, social security, etc.  I was recently found disabled under social security.  I started to cry because it felt like a "confirmation" that I am not the same person -- not as worthy as I once was.  I worked for decades and I was told by my doctors that I deserve the money, but I am hiding it from almost everyone I know.  Sometimes I want to yell out to people -- why don't you try switching places with me for one week and then see how you feel about these "special provisions"?   I wish I could get back to work.  I've been back, on leave, then back -- and it is now to the point that I definitely can't work.  It is very hard to accept.  I also am glad people aren't put in institutions so quickly as years ago.  Sometimes I do wonder if it would be best for my family and my church if I WAS off somewhere else... for THEIR sake, not mine. 

It hurts inside when I remember the person I once was and what I am now.  I try to remember that my health issues are/were not MY own doing.  We can hold our heads high because God IS still using us.  Sometimes we can't see it and others ignore us -- sometimes because they don't know what to do or say.  BUT, God uses all of us somehow even with our limitations.  God is using YOU through your comments here in the Network.  You are a voice for all people with disabilities -- physical or mental -- and YOU UNDERSTAND how we feel and aren't afraid to share it.  I, for one, gain great encouragement from your posts throughout the Network -- and also Mark's here in the Disabilities Concerns section.  My brain issues make reading the Bible difficult.  I can read the words, but when I turn the page, what I've read is kind of "gone."  I love God because I know it is what I ALWAYS believed from little on.  I try to trust in Jesus because I KNOW that I felt happiness and actually FELT God's love the first 30+ years of my life.  I rely on that memory of what I used to FEEL inside since I don't feel much at all anymore (numbness).  I used to be an avid book and Bible reader.  Being able to go to the network and read what is written helps remind me at least for a short time that God does love me and we are valuable to Him.  Reading your thoughts reminds me that I am not alone and others have the same feelings I do.  I try to remember that it doesn't really matter how "valuable" we are to others here on earth (how they value us).  We are still God's children and He loves us even when it feels no one else does.  In His eyes we are perfect -- even now. 

I've been reading the network basically since it was started and just recently built enough courage to post.  Ken and Mark, while reading your posts -- Ken especially -- I feel as if I've found a friend that TRULY understands.

Posted in: Mom's Dementia

B P on December 9, 2010

Mark -- First of all, thank you for all you do for people with disabilities and for bringing mental health out into the open with your posts and articles.  Unfortunately, our church didn't do much with the disabilities Sunday.  I had some initial ideas to share with our pastor, but I ended up struggling a lot around that time and never shared them.  You wrote the following in an earlier post:  "John, I never thought much about how one could re-experience life from one's younger years as memories regress. Could bring horror (as you describe) or joy depending on what is stored away. Also, could bring a questioning of one's salvation, if one's memories regress to the time before one received Christ."

I am an adult survivor of some pretty nasty childhood sexual and physical abuse.  The abuser was a much older close relative who was very messed up when he returned from the war in Viet Nam.  He admits what he did so there is no question all of what I remember happened.  But, he is like many of the other veterans of that war who returned “messed up” or on drugs or addicted to alcohol.  I was quite young when he came back home and the abuse lasted for years.  I have Post-Traumatic Stress Disorder and Depression.  When you talk about not thinking about how a person can re-experience life from one's younger years (like the person who was in a concentration camp), you also need to think about people with PTSD.  Experiencing "flashbacks" and having recurring memories that sometimes include actual physical feelings (not just emotional) are a symptom of PTSD.  PTSD isn't talked about much in the first place because it is a MENTAL illness and there is still A LOT of stigma out there -- even in churches which SHOULD be a SAFE place for people with ANY type of illness.  Also, many people only think of PTSD happening to soldiers serving in active combat.  PTSD is very common among survivors of childhood abuse, both physical and sexual.  In certain types of individuals with a family history of mental illness (depression for example), even the death of a loved one or seeing a car accident in which someone dies and surviving natural disasters or something like the trade center collapsing on 9/11 can cause a person to develop PTSD.  Rescue workers and police routinely receive counseling following a disaster or terrible accident.  A nephew of mine is a deputy sheriff in our county.  Also one of my brothers was the first on the scene of a terrible semi accident and all the witnesses were included in group therapy to avoid them developing PTSD.

I've been in counseling for quite a long period of time.  I can thank God that the childhood memories were stored away in my memory until after my children were in high school.  I was able to raise my children to high school age without having those awful childhood memories to deal with.  There are specific circumstances that caused my brain to block the memories out until about 30 years after the abuse ended.  Even now, years after the first memories came back (originally triggered by a situation I was in as an adult that gave me the same inner feelings as during the abuse), I still have flashbacks and new memories of “episodes” occasionally.  Being in very stressful situations (or just having a lot of stress) can bring setbacks and some people with chronic PTSD relive these awful events of our lives over and over again.  It is very likely the person who abused me had PTSD himself when he returned from Viet Nam.  There is a high level of PTSD and depression among our servicemen and women and veterans today who are serving or have served in the middle east (or previous wars).  It used to be called "shell shock."  We need to continue to pray for our soldiers and veterans!  It is also important to realize that PTSD can be a result of other life situations beyond war.  I have been in counseling with one of the top doctors in the state that specializes with PTSD resulting from childhood sexual abuse as well as pastoral counseling.  I have been able to forgive my abuser, but I still cannot be near him because it is a trigger and causes setbacks.  I also remember that the abuser was really a "kid" himself and that he did not want to go to war – he was drafted and went to Viet Nam at the age of 18.  The things he went through and saw there were horiffic and awful.  I pray for him since his own life has not been easy.  Other older relatives tell me the abuser was a totally different person when he came back from Viet Nam.

I think as we pray for people who experience dementia and physical disabilities, it is important to remember that many people in the US today (and in the CRC and also RCA churches since I’ve been a member of both) have gone through past life experiences that still cause a LOT of pain in our lives today.  PTSD wreaks havoc with relationships – sometimes that also includes relationships within the church family.  Some are caused by stigma, others simply by lack of trust on the part of the mentally ill person or the other person involved.  The most important thing is to let people with mental illness, as well as physical disabilities, use their gifts to the glory of God – we need to feel accepted and loved.  Often, we know what is best for us even in the midst of our struggles.  People need to show THEY BELIEVE IN US because we can't always believe in ourselves or our abilities.  We need to at least be given a CHANCE to succeed in church involvements, activities, and responsibilities.  We can handle involvement and responsibility most of the time and we need to be accepted even if we need to back out of something for an episode of MENTAL illness just as someone with a physical illness would be accepted.  Mental illness is caused by physical changes in the brain.  Our illness when it flares up at times should be an acceptable “excuse” just like the flu or a diabetic having low blood sugar.  We take medication for mental illness, just like diabetics take insulin.

It is extremely difficult for people with mental illness, especially survivors of childhood sexual abuse, to trust ANYONE – even God at times.  We may not always be perfect and may not be as capable as we once were or it may take us longer to do things.  At times, we may need special "accommodations" like people with physical disabilities, but we are the SAME people we were before we developed a mental illness.  Many of us still have the same skills and talents – gifts from God.  It may just take us a little more time or practice, we may need to receive communication and instructions in WRITTEN form (like you mentioned with your mom's dementia), or people calling or doing extra little things to help us remember.  Mentally ill people need to be given a CHANCE.  If things don't work out, someone else can always be found to finish what we tried to do or do it next time.  My pastor has told me many times that he cares about people more than programs.  That is important for all of us to remember -- whether or not the people we are involved with in church have any kind of disability.

You also wrote about how remembering previous life experiences can affect a person's faith – and someone's belief that God loves them.  I struggle with that almost every day because sometimes my brain doesn't always do what I want it to do.  The devil is in there working to win my soul.  Deep down, I know I believe what the Bible says and know God still loves me – I believed that my entire life before the memories came back.  Sometimes it is even hard to read the Bible or anything for that matter.  I know I believe and need to trust God, but I still have doubts.  I asked Jesus into my heart in second grade because of my Sunday School teacher that year.  Please let your Sunday School teachers know how important they are in the lives of their kids!  Thankfully, I have a few close friends and family who are reminders of the good things in my past and my life now or who help remind me if I get discouraged.  I will forever be grateful to my current CRC pastor, who has helped me and my family tremendously with faith and relationship issues.  He serves our congregation with amazing dedication and works tirelessly.  He is always providing scripture passages and I know he is a constant prayer warrior for all of us.  He sometimes repeats the same scripture and reminds me of God's promises over and over again.  A survivor of child sexual abuse needs to hear this more than one or two times as we face the ups and downs of our mental illness.  I am thankful he is willing to take the time to do this.  His wife is very supportive as well and I consider her a caring friend.  They both accept me the way I am.

I do think the CRC should consider offering pastors more training in helping adult survivors of childhood abuse.  When I first went to the CRC website, it was encouraging to see there was an actual “department” concerning Abuse.  It was discouraging when I read that mainly that department is there to protect pastors or other church leaders (or church councils or the church itself).  I realize having structure and policies does protect the church children, but it is much more common for abuse to occur outside of a church setting.  I wish there would be more literature and inservice training to pastors, church leaders, and congregations about HOW TO SUPPORT child abuse survivors.  It would be nice to have more faith-related resources available geared toward adult survivors of sexual abuse as well.  Many people (including in my own church) have an abuse history, but are afraid to talk to anyone or seek help.  It took me a long time to talk openly even with my pastor.  He is a pastor, God's representative, but yet I struggled for months afterward worrying about what even he thought of me.  Often, especially in cases of incest, the victim carries that secret knowledge within themselves because of shame and fear of what people will think.  However, it’s amazing... if you share your story with a few other church members, you will find that many others have been touched by the same kind of pain I went through in their childhoods (even within our small congregation).  Everyone’s “story” is different, but all of us felt or still feel the same feelings at times – and the same stigma.  Childhood sexual abuse is much more common, especially in “upright religious families” than most people like to admit.  I grew up in a very strict Christian home as did the other church members I've talked with.  I think more support needs to be given to the people who work with survivors/victims in our churches, other than just teaching pastors/church leaders how to protect themselves in a church setting or telling them about legalities involved.  Ninety percent of childhood sexual abuse victims were abused by a relative or friend (someone they knew).  It is important to keep kids safe at church – but it is also important to help abuse victims and survivors regardless of whether or not the incidents occur with a church leader or at a church/parsonage or outside of church.  Parent education is also important -- and I wonder if it might even be helpful for children to learn about "safe touching" and keeping themselves safe from strangers in a church related setting instead of just in school (public or Christian schools).  Not all parents find it easy to discuss these things with their kids.  A Christian perspective could be very helpful for some families.

Due to stigma within my former church and even sometimes where I attend now in the CRC, I have doubted my faith and beliefs at times even more because I felt stigmatized by members of my church family.  These were/are CHURCH MEMBERS that have said or done hurtful things.  If a person doesn’t feel safe 100% of the time in a church setting, why would we ever feel safe anywhere else?  Safety is extremely important for people who were abused as children.  The actions of a few seemingly "uncaring" church people, impacted my faith tremendously more than anyone outside a church setting could.  My pastor and a few close friends (church and non-church) continue to keep my faith from dying completely.  I have been fortunate that my pastor has sought out educational opportunities and reading so he can better help me and others like me in our church.  He has been wonderful and some church people have been also – if you get to know people and share, there is much more in common (including hurtful experiences in our past) than most would realize or admit.  One in four girls will be sexually abused before she turns 18, 20% of these are under the age of 8 when the abuse takes place or starts.  There are 39 million child sexual abuse survivors in the US.  Sixty percent of pregnant teenage girls were victims of child sexual abuse.  (As Christians, we need to keep this statistic in mind when we choose to make judgments about these girls!)  I am including links that provide a lot of good information and statistics that are really scary as we think about our own children and grandchildren.  Ninety percent of all child sexual abuse is committed by a family member or by someone else the child knows.  Most often they are parents, siblings, uncles, nephews, cousins -- and this includes Christian families.  The websites are: RAINN (Rape, Abuse, and Incest National Network) found at the Darkness to Light website which is  There are many more helpful and legitimate websites as well.

Mark, thank you for all you do on the network and for supporting people with ALL kinds of disabilities.  I find comfort in many of your posts and those of other individuals in the disabilities area (and other posts as well).  I have been a reader ever since the Network was started (in several areas not just disabilities).  I apologize for writing so much here.  Perhaps these thoughts have been building inside for a long time.  It took a while to build up my courage to post because I am also kind of afraid of people I don’t know, especially men and especially what people think of me when they find out I was abused AND that I have a mental illness.  My self-confidence has also taken major hits.  And I, like most victims of sexual abuse, am afraid to share my past even though I am constantly told “you were the child and are the victim, the abuser was an adult and a Christian adult at that.”  I guess I felt safe writing this here since I can remain anonymous. 

Most of all, I want to praise God for bringing me to the CRC church I am a member of now.  I’m not sure where I would be (if anywhere) had I not “found” my current pastor and church family by searching for church websites in my community.  Pastors, please keep your websites current and make sure you sound welcoming to people from ALL walks of life, especially show the LOVE of God through your website.  That is what drew me to contact my current pastor and then visit his church.  The website did not sound judgmental at all, but stressed acceptance of all people and God's love and grace, which is what I really needed to hear.  They said what to expect -- and that they didn't care if you didn't come in a suit or dress -- they just wanted you to give their church a try.  They acknowledged they, too, are broken people and make mistakes, but that all of us are forgiven by God's grace.  I especially thank God for Jesus who came to earth during this Christmas season to be the true Good Shepherd.  I thank God for my current pastor and for all the pastors who work so hard to care for their flocks like Jesus would.  I also thank God every day for a husband who has stuck with me after the memories and mental illness started, even though my illness makes his life difficult sometimes.  I know he struggles at times with some of the changes in me since the memories came back.  At times life isn't easy for the spouse and children of a person who is mentally ill and also happens to be a survivor of childhood abuse.  I honestly think in some ways, it is harder for the family of a chronically mentally ill person than most physical health issues.  Physical issues are often "cut and dried" after trial and error with treatment and a lot of medical research.  The human brain is one of God's most amazing creations, if not THE most amazing.  It sets us apart from all other creatures.  No one really totally understands how a person's mind works or why we sometimes have the thoughts we do.  It's important to remember to pray and care for the spouse and family of a mentally ill person, too.

B P on April 20, 2012

Why not let each CHURCH decide instead of each CLASSIS?  Individual churches are very different even within one classis.  Churches should have control over whether or not women are elected/selected.  Ultimately, in our church God makes the final decision because we draw names.  PLEASE consider doing more at the church level.  There is already a lack of unity within some congregations.  There are enough issues between young and old (music type for instance) and specific individuals.  Let each church handle this question individually with voting by their OWN MEMBERS.  The possibility of women in council was suggested to our pastor.  He immediately said, "No, I'm not even going there" -- not because he (and many) of our congregation are against it, but I think he said it for two other reasons:  1) he didn't want to prepare for a battle, 2) many churches in our classis are against it.  I say churches should have more power for these decisions.  I don't have time to read all of the comments above, but WHY NOT HAVE CHURCHES DECIDE THIS TYPE OF THING SINCE IT INVOLVES A MEETING GROUP WITHIN THAT CHURCH ONLY?

B P on May 17, 2012

In reply to by anonymous_stub (not verified)

I, for one, am a woman who would like to serve on Council.  Many of the men in our church do not come to church on the Sundays they are scheduled to collect money.  One rarely goes to Council meetings.  Much of the leadership outside of Council is done by women -- including me.  If the men aren't willing to be committed servers on Council, why is it wrong for women to want to serve even on Council?  THAT is precisely why I feel it should be left up to the individual churches.  If we would have more leadership by men in Council, perhaps I would feel differently.  For me, and many women, it has nothing to do with a "RIGHT" or "POWER".... we are a small church and lack men who are committed.  We only have 4 deacons and last Sunday, for example, there was only one deacon there -- it happened to be my husband.  We need committed leaders and we are at the point it doesn't matter if they are men or women.  We just need leadership period.  Should our church struggle because we are not allowed to have women serve on Council?  No, I would think God would want dedicated people to serve on Council, regardless of if they are men or women.  So.... I think it should be left to the individual churches then if not all in classis want that, at least OUR CHURCH could do what we want.  It would help us tremendously.  And, as I read all these posts, I think there is some stubbornness and arrogance on both sides of the issue.  That is not a trait God would want any of us to have.  I would think God would want us all to work together -- and that may mean different things for different congregations. 

B P on February 10, 2011

For me personally, the "mental health parity" law has not done much.  In fact, in my situation, it is the opposite.  Faced with providing more mental health coverage, the employer cut back on coverage for physical health coverage to compensate for the new mental health coverage.  There is now equal coverage, but they decreased the "physical health coverage" to pay for what they now provide for mental health.  My husband's employer is also intending to increase deductibles, co-pays, and employee contribution.  Employees may have to provide "equal" coverage, but the employer can bring about parity simply by decreasing areas of the regular health insurance or requiring more employee contributions for the physical side of things.  Insurance companies and larger employers/corporations know how to work the system and get around any law that government passes with good intentions.  Some of the employers in our area are also cutting health costs by hiring only temporary employees.  One in particular, hires people in temporary positions -- 89 days.  They have to provide insurance at 90 days.  If the like the employee, they occasionally will hire them on a regular basis with continuing employment, however, in most cases, the company has them work 89 days, then they miss the 90th day (or 2-3 days).  Then they are called back and start all over a Day 1.  Many of these people are laid off or unemployed from their former jobs and can't find another one with or without benefits.  My niece was employed as a temporary person for about 9 months (less the 2-3 days off around what would have been the 90th day when benefits would start).  Her dad, my brother-in-law got laid off and finally after about 9 months found a new job, but this new job only provides health care to the employee and any children that the new health care legislation requires to be covered.  Their kids are grown.  His wife is the one with health issues, including Diabetes and heart issues.  His insurance covers HIM only as the employee.  He has no children, but his spouse still is not covered.  Companies cut back on all insurance benefits in these ways to offset the new requirements and cost of "parity."  In my case, since mental health parity became law, we are having to pay more for the physical aspects of our health insurance and more co-pays for mental health.  The sad part is that everyone ends up paying more for physical treatment at my husband's employer even though many of them other employees have no one in their family who gets mental health services.  In reality, THEY are being punished because of US (we who have mental health issues).  That makes me feel bad as well.

I think everyone also needs to remember that sometimes a person with mental health problems doesn't have support within their own household.  From what I’ve read, the shooter in the Arizona tragedy apparently did not have this support.  The college seems to have messed up as well, there was little follow-up by ANYONE.  I'm thankful that the above parents care about their daughter enough to try to get an involuntary admittance to a hospital or inpatient program to protect her (or others) and that they WANT to have active involvement in her treatment.  I have not been as fortunate with many family members.

I do need to share something regarding inpatient treatment (my personal experience) that not all people who have not actually been an inpatient realize.  I have PTSD/depression and a movement disorder.  I have been an inpatient -- and it was a very bad experience for me.  I also know of a teenager in our church who tried to commit suicide shortly AFTER being released from inpatient treatment.  I don't have the exact data in front of me, but I remember reading there is a higher incidence of suicide attempts for people when they are released from inpatient stays. The teenager I know attempted suicide within days of being discharged.  My first thought was "I wonder if he learned that from the other kids" and I mentioned that to a relative of his.   Inpatient stays are not always a good thing.  The patients talk with each other -- I learned about ways to hurt myself (self-injury) and some of what other patients felt or did in group therapy.  Group therapy sessions several times a day were required.  I couldn’t “get out of it” until several days had passed when I begged a nurse to ask the psychiatrist to let me stop attending.  None of the other patients' situations were similar to mine.  None were caused by childhood trauma like mine was (I'm an adult survivor who had repressed memories come back as an adult and the perpetrator admits everything).  I had a terrible time being with those people.  If anything, when some shared their thoughts, it made me think even worse things about myself or my situation -- things that I hadn't thought of before I was in the hospital.  I learned ways of doing "serious things" that I hadn't thought of before on my own.  I also was basically afraid of some of the other patients.  In my experience, the patients were and their levels of mental illness were very different.  There was an older woman who thought I was her mother.  I am not wacko or psychotic.  I may have some irrational/cognitive distortions.... but to have this woman follow me around asking me to give her a baby bottle about pushed me over the edge.  I am afraid of men I don’t know because of the type of childhood trauma I experienced.  We were required to eat together in one room and were told to “socialize”.  At mealtime, I sat at a table alone (being afraid of everyone else).  This one man always sat on the table next to me and he always wanted my food.  I heard over and over, “Are you going to eat that?” and he’d move toward me and practically touch my food.  I gave him whatever he wanted.  He and that older woman freaked me out.  Luckily, I had my own room (they weren’t filled up with patients when I was there).  It was at the very end of the hall and for some reason, the old woman and that man never followed me all the way down to my room.  In my situation at least, we were not “sorted” by gender, type of illness, our experiences, or in any other way.  Mine was a voluntary admittance, but you can't just say "I want to leave" and they unlock the doors and let you out.  After signing the admittance papers, THEN they told me that I could ASK to leave, but it was up to them to decide after a 24 hour evaluation.  They also waited to tell me all the "rules" and "requirements" until after I signed the forms.  I wanted OUT so bad.  As someone who experience what I was told can be typical for "general" inpatient stays, I can see why the girl above did not want to go back into the hospital. 

Inpatient care may NOT always best.  I was in a well known, large hospital and I still faced this situation.  I would fight “tooth and nail” before having to go back to that hospital, which does actually have a very good reputation.  My daughter-in-law's mother tried to commit suicide several times.  The time she came closest to succeeding happened when she was in an inpatient facility.  Even though the nurses checked inside her mouth to make sure her meds were gone, somehow she still was able to save enough to overdose during the night.  They checked on her at 2:00 a.m. and she was unresponsive.  She ended up in intensive care, unconscious for 5-6 days and they didn't know if she would survive. Hospital inpatient situations can do more harm than good sometimes (in my case).  Mental health issues are very difficult for everyone, but more for the person with the illness than family or anyone else affected by it. 

I do not receive much support at home (actually often the opposite happens out of my spouse's frustration that I am not the same person after the repressed memories came back, the stigma he still believes is true, and his unwillingness to learn more and have counseling himself to learn ways to provide support and cope).  I more than anyone realize I have made his life difficult and I am thankful he has stuck by me.  I am very fortunate to have a couple who are my very close friends and a pastor who helps me keep my faith alive.  Sometimes it is just a tiny flicker, but my pastor has provided scripture and counseling.  He has also worked to keep me involved in our church using some of my "employment skills" from my former employment.  I can no longer work outside the home, but doing volunteer work for church does sometimes make me feel needed and that I still am a valuable person in spite of my disabilities.  I try my best even though sometimes it is very difficult for me to even get out of bed in the morning, much less accomplish anything once I am up and moving.

Relationships are hard for me (and for those who care about me).  Some of my friends/relatives seemingly don’t care enough to keep in touch and they deserted me – I know it isn’t easy for our friends and family.  But, BEING mentally ill is awful -- I would change my health situation if I could, believe me.  Family relationships DO change.  I realize that and I feel responsible since I AM the one with the illness even though it wasn’t my fault.  Negative things occur for us outside our family and homes as well.  I was transferred to a less responsible (and much lower paying) job at my employer after developing my mental illness.  A change in management  took place a few years later, and the new boss basically fired me -- with a major labor attorney's advice working around the ADA laws (Americans with Disabilities Act).  I have had continual health problems, physical diagnoses and treatment difficulties for the mental illness.  I struggle in relationships -- often they are Christian people who have good intentions, but just don't understand or LISTEN.  Friends do desert you for various reasons and it is also at times hard for us to be with people.  We are often worn out physically and mentally.  Sometimes to the point it is impossible for us to cope.   I could make a list of 10 negative things in a flash that are the result of my childhood or the mental illness/movement disorder.  For me, it isn't just the "mental illness.”  The effects OF (after) being diagnosed and sharing that information with people, the mistreatment by people who don't understand or are afraid of me or who still believe the stigma, can hurt inside sometimes almost as much as the illness itself.  I think this is just another thing that healthy people will never understand "until they walk in our shoes."  I admit that I never understood until I became mentally ill.  I never looked down on mentally ill people and I tried to help them, but I had NO clue to the feelings inside that are a part of it all or the stigma and hurt that can come from people who just aren’t knowledgeable about our mental illness or just don’t listen or ASK us what would be most helpful.

I struggle with WHY God allowed so many bad and hurtful things to happen in my life -- and WHY he hasn't shown more positive results to various treatment plans.  It is hard to keep trusting God.  I know things will work out “for my good” because I do love the Lord, but I've basically come to the realization that "my good" will most likely happen when I leave this earth.  Even though my faith falters, I know God still holds me tight in his hand even when my faith is as small as a mustard seed.  Sometimes it is hard for me to think about waiting until God’s time for me to leave this earth because in my deepest pain, I wish that "my good" would happen NOW.  Treatment can help, but ultimately God is in control of my situation.  He is stronger than Satan.  (Deep down I believe that, but sometimes I say "He is SUPPOSED to be stronger than Satan" because often it sure doesn't feel that way and that is not delusional thinking – I have doubts because of the pain I feel inside).  

Also, I think it is important for everyone to remember that in most cases -- mine included -- we have done NOTHING to deserve our disability, mental or otherwise.  An adult (and a Christian) was responsible for the years of childhood trauma that eventually brought about my mental illness (and also my movement disorder).  He has admitted everything to my husband and siblings, but he has never apologized.  In my heart, I have forgiven him, but I still can't see or be near him because it causes setbacks for me.  I get no support from my siblings.  They acknowledge what he did and that it was awful, one sibling told my husband he asked the perpetrator, "Can't you at least say you're sorry?"  In spite of that, the person who hurt me so terribly as a child has never said one word in that direction to me or anyone else.

I do appreciate the opportunity to share my story and thoughts.  I read that there was a request for a "blog" for parents of children with disabilities.  Maybe there should be a "blog" for adults who HAVE disabilities, maybe separate for physical/mental.  While I have diagnoses in both areas, not everyone does.  Living with a mental illness is very difficult for the person with the illness (and everyone) -- the majority of us are not "crazy" -- and we can understand what is wrong with us and recognize that our thoughts are not necessarily "normal."  Sometimes we don't realize it until hours or days later.   I have found myself needing to apologize a day later when I realize I have been short-tempered or regret writing or saying something.  I recognize cognitive distortions and some other thoughts that are not rationale to everyone else, but it doesn't change how I feel inside – it doesn’t change how RIGHT my thoughts are to ME.  People can say, "You're being irrational or delusional" (two words I hate) -- but my thoughts make perfect sense to me and it is frustrating sometimes when people continually “harp” on me about what I think or feel.

To everyone who helps us, learns more about our illnesses, listens and tries to understand, and has to live with us (or counsel us as our pastors), THANK YOU -- but PLEASE be patient.  Most of us try our best not to be a burden or cause problems for others.  Living with mental illness (or any disabling condition) is a hard road with many ups and downs.  So many parts of our lives our out of our control.  We are helpless to change so many things about us or situations around us.  I feel terrible that others, especially people close to me who I love, have been put into a position of having to live with and/or deal with me because of my mental health problems.  To read some of the frustrations that are written within the disabilities concerns area by people WITHOUT mental illness does hurt sometimes and I believe not only me.  I am probably MORE FRUSTRATED that I can't fix my OWN brain (for myself and EVERYONE around me) than any of the pastors or family members who write in sharing THEIR frustrations or difficulties with US.  I recognize I make life more difficult for my family -- and even my pastor's life more difficult simply because of the time he has spent counseling or praying for me and others in our church like me.  We have a lot of hurting people in our congregation.  Mental illness is actually fairly common.  I get very discouraged because sometimes medical treatment and professional counseling doesn't seem to help.  Sometimes what my pastor says (and scripture says) doesn't stick in my brain.  Prayers don't seem to make a difference.  I get discouraged -- and I feel bad because I know others around me (including medical providers) get discouraged.  I even think my pastor gets discouraged because there are so many ups and downs and at times very little improvement.  Some situations, probably like the young girl above, are just very difficult situations and as hard as everyone tries, it will just take more time, new ideas, or .... like I believe in my case, it is a thorn in my side that I will have to live with forever while I'm here in this world.

Sorry to write so much – sometimes thoughts just pour out and are hard to stop.... 

B P on February 11, 2011

In reply to by anonymous_stub (not verified)

Ken and Mark,

Thank you both for your understanding and caring thoughts.  I continue to read articles on the Network and so much of what both of you write touches my heart.  I honestly do think that unless a person has a mental illness, it takes someone very special and caring to be able to understand -- it can only happen through listening and education, and going through experiences with people like me.

Ken, I'm glad I was able to write some thoughts for both of us.  I previously posted under just the user name "B."  Because of my fears and the shame I feel inside, I didn't want anyone to be able to find out who I am or where I go to church.  You responded to my previous posts when I was known as simply "B".  The more I read of what you write (and Mark), the less shame I feel about my own mental illness and personal situation.  It IS true that mental health problems are caused by physical brain changes and so mental health conditions ARE actually physical illnesses, but there is still such tremendous stigma and shame.  Few people understand and relationships change -- sometimes my fault out of fear and just not feeling the strength or energy to maintain relationships.  ALL relationships become different when mental illness strikes and it takes a LOT of hard work on the part of the person with the illness AND the healthy friends and family.  People are so busy with their own lives, that they just aren't willing to put forth the effort to remain friends or help.  If you remember my very first posts as "B", then you understand even more why it is so hard for me to stop the shame and negative feelings I have about myself.  I try..., but then, another hurtful experience happens with people who say they care (or who SHOULD love and care about you).  It reinforces the shame and fear I have.  Sometimes people hurt me without doing it intentionally -- from lack of knowledge.  That's probably the case most of the time since most Christians would not deliberately set out to hurt another person, but it doesn't change the painful feelings inside.  Sometimes it is easier just to withdraw from everyone because the risk of getting hurt is just too great.  People with mental illness live a very lonely life even though there are many people surrounding us.  I try to hide things about myself -- I try to appear happy when I'm not. I try to stay active and involved and hide the fact that it takes all my strength for each "performance."  It takes a lot of energy to put on a good show and I always crash afterward. 

Ken, almost every time I read something you write, I feel a little more strength to face another day.  I've seen how you struggle and that you have ups and downs like I do.  I've seen how hard it is for you to keep a strong faith sometimes, but then you write something later that confirms that God does care -- that you do trust Him.  It makes me feel "normal" when I have doubts about God, when I ask the "WHY" questions.  In my heart, I know I do love God and believe what the Bible says because it is what I have always believed and trusted to be true, but it is a constant struggle for me to keep trusting God (and people).

Ken, I want you to know that I've been praying for you and your family.  Even though I only know you through your posts, I feel almost a sort of kinship -- like you are an actual REAL friend in Christ.  So much of what you've written before could have come from my fingers instead of yours.  Thank you for caring and for understanding.  You have been helping me and it doesn't feel like it is just me against an entire "normal" world that surrounds me.  I pray for you to have good days, more energy, clearer thinking, and that you will feel God's love inside of you and in your life.  This may sound corny, but I can almost feel how tired you are sometimes.  Not just what you write, but I actually KNOW how weary and worn you are feeling.  I understand what you mean when you say you sometimes lose "coordination" between your brain and hands.  I have that same problem with speaking.  It is easier or me to get my thoughts out by typing -- I was an administrative assistant so I did a lot of typing.  My fingers can spell better than my brain can.  My fingers type my thoughts sometimes even before I finish thinking them.  I have more trouble communicating verbally. I say wrong words, or I saw the word but just start it with a different letter or two words come out as one wrong word.  Sometimes my mind just goes blank mid-sentence.  The other day, I talked to a person and agreed to something and have no memory of it.  I called her a day later to ask her the same thing that apparently we had talked about the day before.  She seemed frustrated that I didn't remember the first conversation.  I have no memory of it at all.  I asked if I might have been sleeping when she called the first time.  She said no, that I was very coherent and sounded totally awake.  These memory lapses and loss of time and the difficulty with cognitive issues are very hard for me.  I used to be such a good communicator and such a fun, happy, people person with tons of friends from all walks of life.  All of that is gone.  Now I struggle to keep family and church relationships alive.

Early on when my health issues started, a friend gave me a little picture with this saying on it:  Courage doesn't always roar.  Sometimes courage is the quiet voice at the end of the day that says, 'I will try again tomorrow.'  Ken, you show tremendous courage and I pray that God will give you restful nights and strength each day -- and many more tomorrows.   

Mark, I have been praying for you and your family as well (and for your ministry in disability concerns).  You do very important work and I also find comfort and feel true compassion in your articles and posts. 

May God bless you both.

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