That’s me above, and my pup, Gracie. This picture was taken nearly 5 years ago while I was still working. I was living in Seattle, WA at the time, and working in a long term facility as a recreation therapist (CTRS). And, trust me, even while donning a huge smile, I was severely anxious and struggling!
Since then, I’ve been approved for SSDI and have been focusing on rebuilding my health, one day at a time. My hope is to live gracefully with my illnesses of: Bipolar I, PTSD, ADHD, OCD, and PMDD. I have learned to accept my illness and am acquiring new skills and approaches to cope more effectively.
The suffering I’ve endure related to my mental illness has been amplified by the stigma and the shame surrounding it. It has taken me years to separate myself from the symptoms that my illness has caused and the stigma that is perpetuated by those who lack the awareness and sensitivity to understand my struggle. The shame I feel from having an illness has significantly decreased over time, as I have worked to cultivate acceptance and compassion for my struggle.
The “stigma and shame” surrounding the “suffering” can, at times, exacerbate the severity of my illness. It has taken years of healing to separate the “suffering” from the “stigma” and the “shame” that often accompanies mental illness. I share in the following paragraphs how the suffering, which is often biological for me, has been impacted by the stigma I’ve faced, which inadvertently causes shame. Being able to see these as independent from one another, has allowed me to move further along in my healing process.
What do I mean by my “suffering”?
My “suffering” is my life-long struggle with an illness that causes chemical changes in my brain that are often difficult for me to manage and control. I never chose to be mentally ill, not for a certain time period, or even for a day! In fact, my illness began when I was in the “prime” of my life! I was captain and MVP of the swim team, had a leading role in the school musical, and was well supported by my friends and church. Like many others who struggle, I was active and involved prior to the onset of my mental illness. My illness began around my sophomore year, and it crept along, gaining momentum, until one day it was painfully obvious to others that something was just “not right”. In my case, my struggle presented itself as a combination of symptoms that included: obsessive & intrusive thoughts, delusions, anxiety, panic attacks, depression, and disassociation. I was acutely aware that my thought processes were somewhat “off” and I decided, on my own, to seek treatment. It was unsettling to me at the time and caused me much distress.
I have often made the comparison that my “suffering” is much like having an onslaught of bad “side effects” to a prescribed medication, except that the symptoms are often more severe than that of side effects and the onset and duration of symptoms can be unpredictable and uncertain. For example, too much caffeine may cause some to experience symptoms comparable to mild mania in that they may be: edgy, anxious, irritable, energetic, even euphoric, etc. Their mind might even race and they may feel overly optimistic about what they can accomplish. Depression can feel somewhat like taking too much Benadryl for an allergy attack: one can feel foggy, exhausted, excessively sleepy, and withdrawn. In drawing these comparisons, I am trying to help a person who doesn’t suffer understand that the symptoms are not only biological, like side effects that must wear off, but they are also difficult to “snap out off”. Unfortunately, for the sufferer, it is not as easy as discontinuing a medication to stop the unwanted side effects.
Thus, my “suffering” is a lot like clipping along and doing “ok” and then being suddenly blindsided by a cycle of unwanted “side effects” in which there is no escape. Sounds like a personal hell, right? It is. This is the suffering that most people (unless they experience it) do not understand, while some others do not even acknowledge. Medication and other approaches (mediation, therapy, etc.) can sometimes alleviate or decrease symptoms, but many of us suffer for years, on and off, endlessly trying to “escape” a chemical imbalance that causes the illness.
Unfortunately, because mental illness is often misunderstood, I’ve had to “suffer” in world that stigmatizes and shames those struggling. There are many people that question the validity of mental illness and have unfair and unrealistic expectations of those struggling. I can remember being released from my first hospital stay and friends laughing at me or telling me I just need to “snap out of it”. I even had a counselor in college who told me, I needed to “pull my boots straps up, and try harder”. Obviously, this caused me immense shame as I blamed myself when I struggled to control my moods or manage my level of anxiety. This compounded my anxiety and depression as I felt ostracized from others and would resort to “self-loathing” when my illness became episodic and I couldn’t “snap out of it”. I often blamed myself and became more alienated. I was diagnosed before the internet was in existence and couldn’t reach out to “social media” or on-line groups for support.
Often people who have a mental illness feel that they must hide their struggle from the workplace, for fear of retaliation. I remember after being initially diagnosed in the early 90’s with Bipolar 1, I was told to “hide” my diagnosis from others, particularly in the workplace. This only served to ramp up my anxiety as I struggled to keep everything “sucked in” and hidden from view. I have even lost jobs and experienced discrimination in the workplace when requesting help in the form of accommodations. My struggle was often viewed as not credible and I was seen as a “troublemaker” or an “attention seeker”.
The stigma surrounding those struggling with a psychiatric disorder, often prevents people getting help in the workplace and seeking treatment. The effects of stigma can be devastating and can mean job losses and access to adequate care. Many of the failures stemming from those suffering are not the fault of the individual struggling, but of the inadequate and unjust system that perpetuates stigma and negative stereotypes.
The stigma can lead to a deep level of shame. Without others having the awareness and/or sensitivity of my illness, of which I felt I had to “hide”, there were times I was misunderstood. I might have been seen as haughty or short when I had to disappear quickly to manage an escalating panic attack. I may have been viewed as uninterested or unmotivated on a day when I was struggling with my depression. My symptoms were often misinterpreted as my personality, and this caused me conflicts with others. In time, I could see clearly that my illness had robbed me of my potential in the workplace, but NOT of my talent, motivation, experience, or passion. It was often how I decompensated during times of stress, due to my illness, that wrecked me. And my frantic efforts to to feign “normalcy” only exacerbated things, until I just “quit” abruptly, or began missing too much work.
These lived experiences of struggling, experiencing stigma, and then feeling shame, ultimately caused me to respect my illness, for what it truly is: a devastating biological illness that affects my mood and perceptions which is often visibly seen through my behaviors. I began to see the distinction between myself, when I am suffering, and myself when I am not. I started to challenge myself in the midst of my suffering to let go of the shame that I had relating to my behavior when sick. I could see that focusing on the negative behaviors that arise during an episode, often served to keep me hooked in a cycle of shame and regret. Instead, I decided to give the illness the respect it deserved and I spent time finding ways to aggressively fight it and keep it at bay.
If you are like me, if will more than likely rear its ugly head again, but this time when it does, I have decided to forgive myself, instead of lamenting the mistakes made when chained against my will, and suffering with a serious mental illness. Now, I get busy working to “get ahead” of the next episode. I’ve decided to be like a hunter and become skilled at tracking it down, intercepting it, hopefully before it escalates too much. And even, if I become ill, and things “get messy”, I quickly return to practicing self compassion and respecting the chronic mental illness that I live with that takes immense effort to manage effectively.
I’ve learned through a lot of years of tears and immense pain, that I don’t have to be ashamed anymore. I also acknowledge that many people are going to misunderstand my illness and there is only so much I can do to educate and inform others. My hope is through writing I can help others better understand what it has been like struggling now for nearly 32 years with a severe and persistent mental illness. And, I am immensely proud of the courage and persistence I espouse, despite the often insurmountable odds I’ve faced living in a world that is still sometimes not accepting or sensitive to my struggle. I hope this helps others. If it does, I am even more grateful for what I’ve lived through and survived.
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