Serious Mental Illness Baggage
Serious mental illness-depression, bipolar disorder, schizophrenia, OCD-come with a great deal of baggage. It does not mean that people can’t recover and go on to lead healthy, happy and productive lives. What I mean is that if we aren’t careful those of us living with a SMI will start to have a collection of negative past experiences that when compounded make it difficult to deal with.
This collection of baggage is something that usually begins with the onset of illness. It can include a negative experience from a hospitalization or with providers, it can be with a pile up of personal and financial losses, it simply can be an interruption of everyday life as we once knew it. One of the problems with all these things is how we cope and deal with it affects our mental health and we are already dealing with illnesses that impact our mental wellness.
My Experience with Bipolar Depression
I have a major bipolar depression problem that I have been fighting since I was in high school. It has taken me years to finally understand how the symptoms of depression manifest in my brain. Only within the past year have I been able to identify the negative thought process that often comes from the Lies Depression Tells You. But the reason I bring this up is to say that having depression makes it even more difficult to deal with the baggage. Sometimes it is just flat out more difficult to cope.
How I Cope
I’ve spent a lot of time trying to understand how losses have affected me. It wasn’t until today that I read an article that stated how difficult job losses are that I realized the impact my job loss had on me. I took some time to let the article digest and then I did a little exercise where I wrote down on paper all the things that happened as a result of that job loss.
For some reason writing things down seem to help validate the importance of them. It also has a way of releasing some of the negative emotions that come from holding it all in. It’s a coping strategy I am using more and more everyday.
In a time when politicians are trying to figure out what kind of changes they should make to the mental health system, I just get stuck on one fact–serious mental illnesses are difficult to live with but the point is many of us are living with these illnesses. We might not all be working in high paying jobs but many of us are dealing with the everyday baggage that has been left on our doorstep while maintaining our responsibilities as parents, caregivers, employees and as independent adults.
My hope is that we collectively will continue to share our thoughts and feelings about mental illness and in that sharing we can continue to find a peace of mind. At the end of the day it’s not going to be any one thing that helps us manage, but a collective number of things we do to help us live our lives. After all we deserve to have a life too!
Sometimes I Feel Like A Failure
Does having a mental illness make you feel like a failure? As much as I know I am far from a failure I still have my moments when I look at former colleagues and think, “What the heck happened to me?” Of course I know exactly what happened—mental illness dropped on my doorstep and interrupted my life, as I once knew it, but sometimes I have to remind myself of this fact.
Believing we are failures because we have a mental illness is really part of self-stigma. It’s fits right under the category of blaming ourselves for having an illness. I suppose it is in part a way to try and make some sense out of various behaviors and in an effort to take back some control over the situation we point our fingers at the person looking back at us in the mirror.
Self-Stigma: Shame & Blame
In times when I am suffering with a depressive episode I shame myself into believing it’s my fault, as if I really have any control over the illness. The shame makes the situation far worse and really adds to the bad feelings I already have about myself. I made a point to stop the shaming the last time I was sick. It’s already hard enough as it is to get well again but I learned I needed to be a better friend to myself.
Why Can’t I Be “Normal?”
If only I was normal I wouldn’t have to deal with all these things. Mental illness can take you out of mainstream society. It can interrupt your life with hospitalizations, frequent doctor visits, therapy, medication side effects, loss of work and all these things can cause a withdrawal from life. Stepping out of my daily course of living has made me feel like a complete failure. And then the voice of reason kicks in and I hear myself say, “If it weren’t for bipolar disorder life would be different.”
I’m sure not everyone who experiences a mental illness has felt like a failure. But I am willing to bet many people have and I want to speak to those people. I want to tell them to lift up your head and hold it high; hold back your shoulders and walk with confidence; start believing you are so strong because you have faced off with adversity and you have won; you are a valuable member to the community; and you will find your way to recovery. Above all you are not a failure.
Mental illness can cause so much pain and many personal struggles. I have learned that I cannot give it any more power over me than what it deserves. I have approached it in a way that says, “I have a mental illness and it’s not my fault, and I’m going to pick up the pieces and move forward with my life. No mental illness is going to stop me from living a healthy, happy and productive life.” It’s my mantra and I believe it!
I have been blessed not to have many physical ailments, however, I feel like I have been “cursed” with depression (I know that’s not true). Depression is the kind of illness that makes any physical illness worse. It affects the mind, body and spirit and does so with a relentless grip that causes emotional torment. A therapist once told me, “Depression tells you lies Amy. You can’t believe those lies.”
Given you know how terrible depression really is what do we do to survive through the episodes? What are some ways we can get through the times we are sick? If depression lies to us then who can tell us the truth and will we listen when they do?
The Lies Depression Told Me
I recently just got well from another major bipolar disorder depressive episode. It lasted about 4 ½ months. It got worse before it got better and it took a medication change to help me begin to feel better. I had a few suicidal thoughts but nothing like I have had in the past. Mostly the thoughts that said, “You’re never going to recover. You’ll always be depressed.” I knew that was a flat out lie and I knew right away that I was dealing with the symptoms of depression.
I survived this last episode by recognizing the lies immediately. I called them what they were and it seemed to stop the endless torment that can happen. I began to think about other things and kept acknowledging what I was dealing with. I gave myself a break and stopped beating myself up for sleeping 14-15 hours a day. I believed I could trust my doctor to prescribe the right medication, at the right dosage that was going to help me. When hope ran away I ran after it.
Surviving A Depressive Episode
What also helps me is to research specific topics about depression. This works if I can concentrate long enough to read the article because sometimes my concentration goes by the way side when depressed. But I focused on doing a little bit at a time—read a little here—research a little there. I read anything to get some form of relief.
It helped me to seek out positive stories about people who had recovered. I liked learning their stories and allowed myself to be lifted up by their celebrations. I turned to the Depression and Bipolar Support Alliance and explored some of their resources. I even returned to one of the DBSA peer group meetings.
5 Helpful Strategies
In summary here are the strategies I used to help me survive my last depressive episode:
1) Recognize the symptoms and don’t believe the lies
2) Have patience and forgiveness for not being able to complete daily activities
3) Look for positive examples of people who have recovered—it will provide HOPE
4) Look to someone you trust to help you (maybe a physician)
5) Believe things will get better—they always do!
The “Recovery Movement” in mental health has been around for several years. I have read different opinions about recovery and I think it’s important to understand what recovery actually means.
A Recovery Definition
According to the National Alliance for Mental Illness recovery is a process that includes having an initial diagnosis, learning about your illness and the treatments available, sharing information about your illness with friends and family and finally doing something to help other people with your illness. Nowhere in this definition of recovery does it talk about resuming your life where you left off before your diagnosis.
Before I read this explanation from NAMI I really thought recovery meant I could pick back up with my life as I once knew it. But realistically I had to learn that I had to accept the fact that I now had limitations I had to consider. I have heard the argument that everyone has limitations and while I agree with this I am coming from the standpoint of when you get sick and because of whatever illness you have, your life as you once knew it has changed. It has become a “life interrupted” by mental illness.
Severe Mental Illness
I will be the first one to admit I love it when I read success stories about people with bipolar disorder, schizophrenia, depression, post traumatic stress disorder or anxiety disorder (classified as severe mental illness) who are living examples of people who have been able to get out and work full time jobs. They have either gone back to work or have changed careers. I get excited thinking about the possibilities for my own life.
At the same time, I have to be honest and tell you that we have tremendous hurdles in getting to this endpoint. Our disorders may go into remission but often times we still have to continue taking medications, going to the doctor and/or therapy visits, and closely monitoring our symptoms. So the most important point is that recovery in no shape or form means “healed.” If anything it means people who have learned how to overcome many obstacles and lead a healthy, happy and productive life. I think people who are living with mental disorders have a strong inner strength. Part of recovery is being able to recognize those key strengths and use them to our advantage.
I am glad there is a recovery movement in mental health. I like the idea that younger people can be given a sense of hope that the proper treatment can help them go on to achieve their goals. But I also think it has to be tempered by the fact that severe mental illness is really difficult to manage and if you are managing it well you are a superstar in my book!
Bipolar Disorder Steals
In case you haven’t heard bipolar disorder is a thief. You know my life was going along just fine until I was hit with a severe bipolar episode. For all practical purposes I had it all—great career, wonderful relationship, plenty of money, a home with a pool, spa and basketball court, and plenty of friends. It didn’t take long from my first episode for my entire life to implode. At the end of the day it’s not the material things I missed most it’s the intangibles.
Actually it took about four years after my intital diagnosis before my life started to be completely disrupted. As you can imagine I spent a great deal of time blaming myself for allowing bipolar disorder to wreck havoc with my daily course of living. But really what’s a girl to do? Did I see the warning signs that if I didn’t get the proper treatment the illness was going to get worse? Nope. I can honestly say that no doctor ever said that to me until I was already living proof that it can get worse. At that time it was a no brainer.
Limited Resources & Stigma
See that’s the thing about mental illness. Because of the stigma and the limited amount of resources for treatment no one really sits you down and tells you the way things are gonna be. Often time they just write out a pile of prescriptions (that frequently make you gain a ton of weight) and they send you out the door. I don’t remember anyone ever taking the time to explain to me that according to the National Institute of Mental Health more than 80% of all bipolar patients experience psychosis. Who knew?
I had to take it upon myself to research bipolar illness long after I had experienced the gut wrenching losses because of the disorder. Often times I have found myself giving a therapist a specific statistic and/or fact about bipolar disease. I have been shocked that they didn’t know it. Then again, without playing too much of the victim role should I really have expected anything better?
Years of Treatment
It took me 13 years before I actually found a physician who could give me more insights about the illness than I already knew. I don’t understand how people can go to school for more than 10 years and not be able to relate to a bipolar patient. It’s just beyond my comprehension that not only do we have limited resources for mental health treatment we don’t always have the best treatment either. But who is going to listen to that argument?
Being a Voice for Mental Illness
If I’m going to be completely honest I have to say I’m a little bitter. Even though I know hanging on to negative emotions about how things have worked out is not going to get me very far. I still have to admit I’d rather things worked out differently. So they didn’t’ and now I have to continue moving forward with my life. I have learned that if there is something you cannot change you can focus the passion and energy on the things you can change. This is why I am speaking out about mental illness. Because no one should have to suffer as much as this population of people do. I plan to use my energy on helping the cause. At least that’s a positive way to focus my valuable time.
On Monday Anderson Cooper from CNN interviewed Mental Health Advocate and Clinical Psychologist Pat Deegan. Pat, who also lives with schizophrenia, created a “hearing voices” simulator that Anderson experimented with. For 45 minutes one day he wore the IPOD that cranked voices into his ears. As part of the experiment he had to do puzzles and a math quiz while wearing the ear buds. If you are interested you can watch the interview with Anderson Cooper and Pat Deegan on CNN. It was fascinating to hear how much difficulty he had trying to complete tasks and it even affected him while walking down the street.
Since I have experienced a few psychotic episodes as a result of bipolar mania I was really glad to know this simulation existed. It is one thing to try and explain what “hearing voices” is like and another to have someone deal with hearing voices. I hope more people will have access to the simulator; especially people in the media who tend to cover mental illness only when a tragedy occurs.
Even though I want the media to better understand mental illness I still contend that one of the best ways to combat stigma is for those of us who live with a mental illness to continue to speak out about our experiences. Sometimes I forget that I live with and write about mental illness everyday. I have been a student of bipolar illness for the past 30 years. Not necessarily by choice but by necessity. My point is the words and their definitions come relatively easy to me.
Speaking My Truth
About a month ago I was reminded that not everyone knows or understands what a person who lives with bipolar disorder goes through. I was giving an old friend of mine a ride to the airport and he ask me why I wasn’t working in the profession I had been in for 18 years. At first I hesitated and then I decided I was going to speak my truth.
I said, “Well I’m not working in the biotech industry anymore, because when I had a bipolar depressive episode the company I was working for fired me while I was on disability leave.”
Jim replied, “That’s terrible. If you were depressed it must have been more depressing to get fired in the middle of being sick.”
“Yeah it was pretty bad. Right around Christmas time too.”
Jim looked at me and then asked, “What is bipolar disorder anyhow?
“It’s an illness where you experience extreme highs and lows and sometimes psychosis,” I was giving him the shorthand version of the illness.
“Psychosis is when you see or hear things that other people don’t see or hear. Or you may get delusional believing things that are otherwise not true.”
Jim looked at me kind of strangely and then said, “Well sorry for asking so many questions I guess I just don’t understand. I’m really trying to understand.”
I was really pleased he took an interest and was willing to have a dialogue about mental illness. I assured him it was no problem and he could ask me anything he wanted about bipolar disorder.
We rode in an awkward silence for a few minutes and then moved on to a different subject. Even though I admit feeling somewhat anxious I felt really proud of myself for having the courage to be open and honest. I figured the worst that could happen is I would lose a friend, and I already knew how to deal with that.
So I am a big proponent of more people understanding mental illness and especially showing compassion to those of us who live with it everyday. I have always been an Anderson Cooper fan, but now I like him even more. I hope he continues to do more segments on mental illness. The more people talk about it the better chance we all have in breaking down the stigma barriers.
I have heard people say having bipolar disorder was a blessing as if the positive things about me had to be related to the illness. Mental illness is no gift. I don’t think I ever sat around after having a terrible cold and said, “What a wonderful gift that I was so sick.”
I recently read a blog by Natasha Tracy, which was titled Do the mentally ill have to be extraordinary to be accepted? She makes several points about how most people with mental illness are simply average, everyday folks trying to get along in this world. Not all of us are off the chart creative artists, famous world changing researchers or Nobel Peace Prize winners. We are simply “normal” people who happen to have a mental illness.
If you think about it, it’s kind of a shame that we have to put people on a pedestal to find some kind of acceptance. I think it falls right in there under the good ole’ stigma category. If we aren’t exceptional than what is our value in society, after all we have a mental illness. Oh my, so taboo.
It makes me sad to think about how common mental illness is and how we as a culture still fail to realize this fact. Consider that according to the National Institute of Mental Health over 57 million people suffer with a diagnosable mental illness each year. I’m sure you’ve seen the statistics–about 1 in 4 Americans have a mental illness.
Mental illness is common—yes. Mental illness is a gift—far from it.
I remember a day when I went to see a new family physician. She had known me from my days as a local “famous” athlete (from a very small town). When she found out I had bipolar disorder she said, “I knew there was a reason you could make the Olympic team. It must have been all that manic energy!”
I was so stunned I didn’t know what to say. How could someone who was a doctor actually think having bipolar disorder helped me to become an Olympian? Ridiculous. If anything I had to overcome the depressive episodes in order to get myself out of bed. The last thing I would have ever thought was “how lucky am I to have depression. It’s just so great! I can’t wait for more weight gain, so I can be slower on the court.”
I’m always amazed at how people find ways to accept they have a mental illness. It is not my place to judge others, but if I am voicing my own opinion I would be hard pressed to ever find any illness as a gift. I think of things like, suffering, symptoms, a lifetime of medication, doctor visits, therapy, significant losses, and I just shake my head knowing there is no way I could ever be grateful for having bipolar disorder.
I believe accepting yourself exactly how you are is far more important than getting on the band wagon to appreciate mental illness as a gift. I accept myself for who I am and I accept that I live with a mental illness and believe that I am no lesser of a person because of it. It took me a long time to get to this point. But nowhere along the way did I ever pay some kind of tribute to living with a disease. It’s just not logical.
The following information explains the Course of Depression. It also includes a link to the Hamilton Rating Scale for Depression.
The Course of Depression
The initial episode often, but not always, follows a significant precipitating event, for example a job loss, relationship discourse or some type of trigger. The course of depression can vary based on individual factors and influencers. Episodes may occur in clusters or could be isolated and separated by many years. Episodes may become increasingly frequent and more severe with age.
Untreated, a major depressive episode may last, on average, about four months. Some people only experience a single depressive episode and thereafter are symptom free. However, many people who experience one major depressive episode will go on to experience multiple major depressive episodes. Consider the following:
- 50% of patients who have a single episode and recover can be expected to have one or more episodes in their lifetime[i]
- 80% of those with a history of two episodes will have another recurrence[ii]
After the initial episode, an individual who seeks treatment may have a response or partial response with symptomatic relief. Symptoms begin to improve in response to medication. A response is defined as a greater than 50% reduction in the Hamilton Rating Scale for Depression (HAM-D). Some patients may still exhibit significant depressive symptoms.
The next step in the course of depression is remission. Remission is defined as an attainment of asymptomatic status (normal). Achieving remission would enable patients to return to their job, engage with their children, and resume normal activities.
Recovery is defined as asymptomatic status for six consecutive months or longer. Mental health consumers are given hope of reaching some level of normal life with the possibility of recovering.
In the past, clinicians settled for patients feeling better or having a partial response to medication. Now, remission is the standard of care in depression.[iii] Similar to other diseases, failure to achieve full remission may result in risks for future episodes, and increased severity including morbidity and mortality.[iv]
Relapse occurs when patients have a return of the same episode and symptoms reappear prior to a complete recovery. Often patients discontinue their medication when they start feeling better. It is important for health care professionals to counsel patients on the necessity of adhering to the prescribed regimen.
A person may relapse prior to reaching the recovery phase, requiring a new medication or combination therapy. Keep in mind two out of three patients will not adequately respond to antidepressant monotherapy.[v] Additionally, depression is a chronic and recurring disorder often requiring medication throughout patients’ lives.
If a person fully recovers from a major depressive episode, and subsequently has a new episode this is called a recurrence. Clinicians struggle to assist patients in maintaining normalcy, since the course of depression often includes recurrence. Studies have shown in patients who have had two episodes of depression, the risk of another recurrence is 80%.
[i] See episode…
[i]Kupfer, DJ.; Frank, E.; Wamhoff, J. Mood disorders: Update on prevention of recurrence. In: Mundt, C.;Goldstein, MJ., editors. Interpersonal factors in the origin and course of affective disorders. London,England: Gaskell/Royal College of Psychiatrists; 1996. p. 289-302.
[iii]Depression Guideline Panel No. 5. AHCPR.
iv] American Psychiatric Association; 2000.
[v] Gaynes BN, Rush AJ, Trivedi M, Wisniewski SR, Balasubramani GK, Spencer DC, Petersen T, Klinkman M, Warden D, Schneider RK, Castro DB, Golden RN. A direct comparison of presenting characteristics of depressed outpatients from primary vs. specialty care settings: preliminary findings from the STAR*D clinical trial. Gen Hosp Psychiatry. 2005 Mar-Apr;27(2):87-96.
Every now and then I take a walk down memory lane and revisit some of my worst experiences in living with a mental illness. Usually I only do this if I need to retrieve this information for a specific purpose. In the most recent example it was because I was writing my story for Mental Health Talk.
The interesting things I found was that after years of wandering when I actually had the onset of bipolar disorder I realized that I had actually been living with the illness for as long as I could remember. It came out loud and clear when I wrote about my bed ridden depressive episodes and the way I can look at pictures over the years and pin point exactly the times I was suffering with depression. A weight gain here, a weight loss there…my body was showing the physical signs of depression and mania. When I was depressed I always went for more sweets and a lot of them. When I experienced mania I had little to no need to eat anything. The end result was a fluctuation on the scale.
It was like a light bulb went off in my brain. The vicious cycle of untreated bipolar disorder would rear its’ ugly head through isolating symptoms where you just don’t want to socialize or do anything with any friends because you are sick. Sometimes I knew I didn’t feel well and other times I just didn’t have a word or words I could put with what I was experiencing.
The writing has helped me immensely put into words my thoughts and feelings about how I have experienced bipolar disorder. It seems that when I am putting pen to paper I am giving a part of me a voice that has otherwise been silent all these years. In the past I didn’t have enough knowledge about my illness to know that the symptoms I was experiencing in fact were not normal. I guess I thought everyone needed to stay in bed beyond noon to feel well from time to time. I certainly thought most people could stay awake for a day or two and not feel badly! I didn’t know this is what you call mania. How was I supposed to automatically know something was wrong with me?
How do we know if we are struggling with a mental illness? In something fairly obvious like bipolar disorder it helps to have other people in your life that can point out the fact that something is wrong. It also helps to be open minded enough to listen to what they have to say. There have been times when I was in so much denial that even when I was told, “your sick,” I wasn’t going to listen anyhow.
Finally after 13 years of struggling with on again off again medications, I eventually found a treatment regimen that seems to be working well. Of course I am striving for complete symptom resolution and that may not be possible. But I would like to experience a long period of remission, if I can just get to that point I will be elated.