Sunday, February 21, 2016

A letter to medical professionals from someone with mental illness

Dear Doctors, Nurses and ER Workers,

While there are times I may come to you because I'm in some sort of a mental crisis, there are also times where I will come because something physically is wrong. And when something is physically wrong please treat me without viewing me through the lens of my mental illness and psychiatric history. When you have to draw blood or take my blood pressure and you manage to see one of my scars from my serious struggle with self-harm in the past, please do not ask about them unless you absolutely have to. And if you do ask and I answer that the scars are old, please don't argue with me. Yes I have scars and lots of them. Yes I have self harmed in the past. Yes I have an extensive psychiatric history. But am I here because I'm at risk for hurting myself? No. I'm here for a legitimate medical issue and would like to be treated as such and not through the filter of my psychiatric diagnosis. Please don't brush my legitimate medical concerns off for anxiety simply because I have a diagnosed anxiety disorder. I've had anxiety long enough to know what is anxiety and what is not. If it was anxiety, I would know what to do and wouldn't be here right now. Please treat me equally and look past the mental health portion of my history just so that you can give me the proper care and treatment I deserve.

Medical professionals, I see it when you look at me like you think I'm doing this for attention. I hear your voices change when you find out about my mental illness. I see you whispering to other staff about how I'm just another nutcase looking for attention. I see it. I hear it. And I'm not okay with it. Mental illness does not erase or minimize the physical suffering I am experiencing. Just because someone is suffering with cancer or diabetes, doesn't lead you to ignore or minimize their health issues, so why should it minimize mine?

My scars are my past. My scars are reminders of where I've been and how far I've come. My scars are a part of me I will probably have forever. And that's okay with me. I understand it and hope that you will too. Please take the time to educate yourself about mental illness and how it presents and please realize that while I do have a lot of emotional pain, I experience physical pain too.

Please do not include the suicide hotline on every one of my discharge summaries because I have a history of mental health disorders. Please do not consider me to be a threat to myself or anyone else just because I may have been in the past. When you do this, it makes me feel that my suffering is less or not as important as someone who doesn't have the mental health past like I do. I understand that you may think this is your way to help, but it doesn't help. If you are truly concerned about my mental state and my mental health, ask about my current treatment and if I'm seeing a therapist or psychiatrist. Treat me like a real person, not just a diagnosis. Because that is what I am..... a person. A person who has a mental health diagnosis but is NOT the diagnosis. Just like a person with cancer is not cancer.

I am a human being with value and worth. I deserve to be treated fairly and for my concerns to be treated seriously. Please be sure to remember this the next time you see me or any other person with a mental health condition.

Sincerely,
Kimberly

Tuesday, February 16, 2016

The Slippery Slope

For me, my breakdowns can happen either very suddenly or gradually. There can be one event that sends me in a tailspin and I'm struggling just to stay alive moment to moment. But those don't happen too often. The event has to be extremely hurtful and unexpected for it to really knock me down quick. This happened in October when I was sent an email saying I was no longer allowed to attend a support group. The day after I got the email was the day of my 5th suicide attempt and the decision was made and acted on quickly.
However, looking back, most of the time my breakdowns occur gradually. On what I call a slippery slope. One I start down it, it feels almost impossible to stop sliding down. It will start with signs like a difference in my appetite and my sleep schedule. Then it will start to affect my enjoyment of things and my energy level. Then I will begin isolating. From isolating, the internal thoughts start going about how I'm this horrible person who doesn't deserve friends and will always be alone and so on and so forth. This slippery slope takes weeks for me to slide down and out of all the times I've been hospitalized, I've managed to fight it once. Out of 16 hospitalization and 5 suicide attempts. That's a lot of breakdowns and there is only one breakdown that I've had that didn't lead me to go into the hospital. And that was only because the hospitals I wanted to go to wouldn't take me as a patient and I was terrified of being sent to a hospital that will hurt me rather than help me (which has happened multiple times). I still spent weeks in a complete depression with suicidal thoughts every day and self-harming behavior. Eventually I was starting to pull myself out of it when I got hit with the big event in October that started my last breakdown.
I've been out of the hospital since the end of October. Almost 4 months. That's a long time for me. The longest I've been out in over a year. And I don't want to go back in the hospital. I'm afraid to go back in the hospital. Because going in the hospital means one of two things: I will either end up in a hospital I have been in before that hasn't helped me or I will end up in a new hospital that I'm not familiar with and could end up in a good or bad situation. But there is the fear of the unknown. I've had multiple hospitals not let me wear my wrist and ankle braces, simply because they have strings (which by the way can't be removed so there really isn't any risk of me hurting myself with them), which has led to a lot of physical pain in dealing with my arthritis. I've had some hospitals that have allowed me to keep my braces. It really depends on the hospital. Another big thing for me is whether or not I'm allowed to have my biggest comfort and self-soothe item - my pillowcase (it has it's own back story which I will write about another time). Essentially this pillowcase is a security blanket for me and I carry it everywhere. It's easy to tote in my purse and keep with me at all times when I need it. It helps calm me down during anxiety attacks. It comforts me to help me sleep and is a very meaningful possession to me though there are many people who can't understand why (because it's very tattered). Some hospitals let me have it. Some do not. Again, really depends on the hospital.
However, I have noticed that I am once again on the slippery slope. This means my energy level is lacking, I'm making impulsive and rash decisions, I'm irritable, extremely anxious (which is usually controlled with medication), my suicidal thoughts are getting worse and I'm avoiding people like the plague. I feel guilty for doing it but it's hard to explain to people what's going on when you don't even know yourself. Last night, I made a big decision very stupidly and on impulse and it has been haunting me ever since. Making me slide farther down the slippery slope. A big decision that once I told a friend about, that friend called me three times in the middle of the night to make sure I was okay. And today I started out feeling okay and have just gotten worse and worse since.
The thing I'm noticing though with this slippery slope is that even though I recognize I'm on it, I'm still trying to isolate and not talk to people. I'm still trying to act like I have everything together. And I surely don't plan on talking to my therapist about this either (mainly because this is only the second time she will be seeing me). So I don't really feel like I have a team behind me. I have a couple friends who I know care and would do anything to help me but I know I need more and I just don't have it.
So will I continue down the slippery slope and end my streak of staying out of the hospital? Or will I manage to somehow pull myself together and make it through? I'm not really sure at this point. 

Saturday, February 13, 2016

A letter to my parents

Dear Mom and Dad,

When you held your baby girl for the first time, what dreams did you have for her? That she would become a doctor? Or change the world? That she would be an overachiever in sports and academics? That she would love her life and her family? Did you dream she would be beautiful? Did you dream that she would be successful?
Were you disappointed when she chose music and academics over sports? When her weight ballooned and she was diagnosed with juvenile rheumatoid arthritis, ending any hopes you had of her being what you wanted her to be? Did you ever think you would cast her aside for your other child, the one who fulfilled the dream that you had for her but she couldn't execute?
Did you ever think that that baby girl you held in your arms would be cursed with the genes that caused mental illness? That ended up taking the life of your baby girl's grandmother and aunt and that affected many other family members lives?  Did you ever think your baby girl would become depressed at the age of 14 and turn to self harm? Did you ever think you would need to be aware of the signs that she needed your help? Or did you know the signs because you experienced things very similar and you didn't want to see them in your child so you overlooked them? Did you ever think you would push the issue under the rug once you knew? Did you ever think your baby girl would end up in the psychiatric hospital for the first time at age 15? Or that she would have 15 more hospitalizations in the years after? Did you ever think that your baby girl would try to end her life 5 times?
Did you ever think your baby girl would be on disability at the age of 21? That she would be diagnosed with 4 mental illnesses: major depressive disorder that is severe and treatment resistant, generalized anxiety disorder, post traumatic stress disorder, and borderline personality disorder? Did you ever think she would struggle with panic attacks, nightmares, flashbacks, mood swings, and chronic suicidal thoughts? Did you ever think that the genes you passed on to your child combined with the environment she grew up in would lead her having to fight mental illness every day? That she wouldn't find a treatment that would work even after years and years of trying medications? Medications like Celexa, Zoloft, Lexapro, Cymbalta, Effexor, Prozac, Wellbutrin, Abilify, Seroquel, Lithium with no relief? Did you ever think that she would even have to try electroconvulsive therapy also known as shock therapy with still no real relief?
Did you ever think that your baby girl would have to fight to get out of bed everyday and try to function? That she would have to fight to get a college education? That she would have to fight the pain inside every day so much that it exhausted her? Did you ever think that that baby girl that you held in your arms that day would end up with a life like this?
Did you think she would cut off communication with you for years at a time, hoping that she could heal and find a way to manage her mental illnesses?
When you saw your little girl for the first time, did you see her becoming a wife and a mother of her own some day? Did you dream of having grandbabies? Did you ever think that she would choose not to have children of her own so that no human would enter the world and have to suffer like she did?
When you held your baby girl for the first time, did you ever see her becoming a person who advocates for those that need to be advocated for? Did you ever dream that she would love those that are helpless, like animals and young children? Did you ever see her becoming strong in spite of adversity, independent without support, and self-sufficient without guidance?
Mom and Dad, could you ever picture what your baby girl would become? With or without you?

Thursday, February 11, 2016

When you're turned away

In my history of dealing with my psychiatric disorder, I have had many road and stumbling blocks. As my illness became more severe, doctors began turning me away.
The first time I was given up on by a doctor was during one of my psychiatric hospitalizations. I spent six weeks in this hospital. The first doctor I had put me on medication and just expected me to get better and stabilize out. That didn't happen and she was going to send me home knowing that I was still actively suicidal. The other patients in the unit I was in were terrified for me. They talked to their doctors and to all the staff and nurses working there at the time. They told them they were worried about my safety. I was worried about my safety. So I filed a grievance and wrote my doctor a letter and that doctor gave up on me and sent me to a different doctor. This doctor was good. She kept me when I needed to be kept even when I didn't want to stay. She worked with me when it came to dealing with my trust issues with doctors. She tried me on a handful of medication combinations and nothing helped. I still didn't get better. So she gave up on me and sent me to another doctor who happened to be the medical director of the facility. That doctor changed my medications and I got a little bit better but not by much, just stabilized out some and was set up to do the partial hospitalization program, where instead of seeing the doctor there I saw her because she didn't want the other doctor to have to deal with my difficult case. Lots happened and I ended up hospitalized again for another 10 days before being sent home. In addition to the 3 doctors I was assigned to during my stay there, there were other doctors that I would see when the doctor I was assigned to was off. Those doctors told me that it wasn't likely I would get better and that they didn't know what to do with me. So they did nothing. When I needed to be re-admitted to the hospital, they refused to take me. I am now blacklisted from this hospital because they don't know what to do with me. They don't know how to help me. I'm not sure if that is for life or how long that will be on my file but right now it is there. I can no longer be a patient at that hospital because they don't know how to help me.
The next time I was turned away was at the hospital I was admitted to next. I was at this hospital about 4 times in the span of a month and a half and spent a couple weeks in their partial hospitalization program. Through this I saw multiple doctors. Each one originally did everything they could to help me. But after everything, with me being there as many times as I was, they started to turn me away. The doctors there will no longer accept me as a patient. I guess what was most frustrating about this part of it was that they gave me guidelines I needed to follow to get back into their program and even when I followed those, they still turned me away.  I'm now no longer allowed at that hospital because the doctors refuse to take me as a patient.
The next time I was turned away was during my next set of hospital stays. The first doctor I was assigned to told me that I wasn't going to get better and would always feel awful. I requested a different doctor and he was much better and more helpful. But the things the first doctor said are still hurtful.
The next time I was turned away was by my own psychiatrist. I had been seeing this psychiatrist for a while at that point and she just looked at me and said she didn't think that I was going to get any better and that there was nothing she could do for me. She said I could get a second opinion and I started the referral process. Every psychiatrist office I tried to get into turned me away because my case was too challenging. I was forced to stay with my current psychiatrist for a short period of time
The next time I was turned away was at another hospital. This hospital kept me for 11 days the first time and then sent me home, only for me to break down and have to go back a week later. When I went back, they wanted to get rid of me as fast as they could and pushed me out the door. When I tried to get back in later on, I would call and they wouldn't even answer or return my phone calls. When my therapist them, they told me that the doctor there would not accept me as a patient anymore. This is the third hospital blacklist I was put on.
The next time I was turned away was by an organization designed to support those with mental illness. They provide classes and support groups. I am not allowed to attend either because they don't think they can help me. I'm in the process of challenging that but it's a work in progress.

That being said, I've been turned away at so many places that it's hard for me to continue to seek out help. Why reach out to someone if they will most likely give up on me and turn me away like so dmany have? It's hard to feel hopeful about getting better when many qualified doctors and therapists have deemed me a lost cause.
I try not to focus on it but it's hard sometimes.

My point with this though is that this needs to change! No matter how difficult a case may be, doctors must do their absolute best to help that person even if that means they spend multiple hours researching and years trying different combinations and other alternative treatments. Our mental health system is so broken and its destroying lives. Mental illness is not a straight and narrow; everyones mental illness look different and acts different. Every person has worth and it's time to start treating them that way. It times for professionals to not be afraid to get their hands dirty and do some work to make sure that their patients are getting help. It's time for our community to step up and challenge those who turn difficult cases away just because it may be too hard. Every life that can be saved and helped is worth it.

Saturday, February 6, 2016

The Spoon Theory and Mental Illness

The spoon theory states that people with illness like arthritis, MS, and mental illness are only given a certain number of spoons for each day and once a spoon is used it can't be again. You can borrow spoons from the next day but that means that you have less spoons to start with the next day. If I was given 12 spoons a day, each different task requires a different spoon. Getting out of bed and getting dressed is a spoon. If I don't take my medicine, I automatically lose two spoons because my ability to function is even more limited due to anxiety attacks, intrusive thoughts or mood swings all of which happen if I don't take my medications every day. Even if I do take my medications I'm still at risk for those symptoms to appear. Getting into work and working each day requires a certain number of spoons, which varies by the day and how I'm feeling and how stressful the day is at work. Then I usually go tutor which requires at least one spoon if not two. Then coming home. If I have any spoons left for the day, I may be able to cook dinner. And even that usually means microwavable meals or mac and cheese. Simple stuff. Then if I'm out of spoons, it means straight to bed and to stay there until I fall asleep only to wake the next morning.
I was approved for disability this past August. I got it on the first try, which is virtually unheard of unless you use a lawyer. But I did. With no help from a lawyer. Because my mental illness is that severe. Severe enough to lead to 12 psych hospitalizations and 4 suicide attempts in less than a year with a total of 16 psych hospitalizations and 5 suicide attempts since I was 15. Symptoms since I was in elementary school but no care received until I was 15. It's so hard for me to accept that my mental illness is that severe that disability took less than 6 months to approve my case and was on the first try.
Because I'm on disability I can only work so much - which is a good thing because I need to be able to be flexible with the amount that I work otherwise I use all my spoons before the day even gets started.
But right now, even not working full time, I use my spoons up during the week mainly with work and taking care of my animals. This means that things like housework, laundry, and even showering don't happen as often as they need to. Right now that means once a week shower. No housework done at all which means my apartment is a disaster and means that the floor in my apartment is barely visible and is like walking through a maze. I have no clean dishes. But I don't have the spoons to use to clean it up. That means that I did laundry twice in December, once in January and have yet to do it this month, yet I have a pile of dirty clothes on the floor and no spoons to do that either. It means school, even though I'm a full time student is put on the back burner. Luckily I have teachers who are understanding and work with me and I have accommodations that gives me extra time to complete my assignments.
When I use more spoons than I have during the week, it means my spoons for the weekend are extremely limited. Sometimes that means I'm lucky if I get out of bed other than to use the bathroom. That means I don't go to church. I haven't been to church in over a month. Because I don't have the spoons to get myself ready and drive to church and socialize with people and act like things are okay when clearly I'm just managing to do the basic necessities in life.
So I use my energy to do things that I know will give my life enough meaning to keep me going. I use my energy to love on the kids at work and love on my animals at home. If I chose to use my spoons only on things like keeping my apartment clean and laundry done then I don't do things in life that give it meaning.
Priorities.
Mental illness makes me prioritize and realize in the long run, it doesn't matter really how clean my apartment is or if laundry is done. What matters is that I'm impacting little lives - both human and animal. And that is worth using my spoons for.

Monday, February 1, 2016

Stigma

Posted on January 28, 2016

The more and more I become aware of the stigma attached to mental illness the more I want to fight it and advocate for those who struggle with.
Part of the stigma that has been really bothering me recently is the jokes posted as Facebook photos. The ones that say things like "I'm going to have meetings at my house for people who have OCD. I don't have it, I'm just hoping they'll take one look at my house and start cleaning" or "the economy is so bad that when I called the suicide hotline, I got a call center in Pakistan and when I told them I was suicidal, they got all excited and asked if I could drive a truck".
Does anyone not see how harmful this is to people who really do suffer from these disorders or struggles? Not only does this minimize the severity of struggles that people who have suicidal thoughts or OCD go through, it mocks it. It also can be a trigger to people who have these illnesses and struggles.
I have friends who have OCD. Serious OCD. I struggle with suicidal thoughts on a daily basis and have tried to end my life on 5 different occasions, 2 of those attempts serious enough to end me up in the hospital for multiple days. Seeing these types of posts can trigger me and make me feel even worse or that my problems aren't that important or severe enough.
This is NOT something to joke about EVER!!!! Mental health is serious and these disorders are not something that should be taken lightly.
When people joke about these things it makes it even more difficult to talk about them because people don't think they are serious. These are the facts:
Bipolar disorder has a 15-20% suicide rate.
Schizophrenia has a 10-15% suicide rate.
Borderline Personality Disorder (which I have) has a suicide rate of 10-15%.
Major Depressive Disorder has a 5-10% rate of suicide.
When are we going to realize that mental health is serious and needs to be take seriously? Forme,I don't even feel comfortable talking about my mental illness to many people. I have trouble even talking about it to professionals because of the stigma attached. And Borderline Personality Disorder is one of the most stigmatized disorders both in and outside of the mental health field. I'm afraid to be honest with how I'm really feeling because I don't want to be looked at as less than or crazy. I don't feel comfortable talking to people at work about my disorders and struggles even though they have told me many times that they are there for me and want to support me. I don't want to be looked down on for something that I can't control. Mental illness is like cancer or diabetes in some ways because it is not something I chose or would ever choose and the course of treatments are complex and take a lot of time. Every persons treatment is different. You can't see depression just like you can't see diabetes. People with depression cannot just snap out of it or stop what they are doing. There is a chemical difference in the brain that causes this to happen.
When will we begin to realize that jokes about OCD and being suicidal are not funny? When will we begin to take these disorders seriously?
It starts with you and me. Take the step with me and make the decision not to joke about mental illness. To stand up for those who suffer. To make a difference one person at a time.