By Katherine Ponte, JD, MBA, CPRP
People with mental illness experience a wide range of emotions. My caregiver and I were not prepared for the emotional onslaught my bipolar triggered. For me, the three most prominent emotions were anger, lack of self-worth and, eventually, hope. They reflect my evolution from mental illness diagnosis towards recovery.
Stigma leads may people to think those of us with mental illness cannot control our emotions, that we are “overly emotional” or “moody.” This created a significant obstacle for me to accept and discuss my mental illness. Peer support was what allowed me to take that first step.
We all experience emotions differently for many reasons, but I hope this piece can help others living with mental illness and their loved ones better understand and address their emotions.
The most difficult emotion to manage can be resentment, anger or rage according to the many people I’ve consulted through my recovery coaching service. This was also true for my me and my spouse. My anger, as often is the case, was based in fear. I feared that I would lose the life I had. I felt a fear of abandonment by friends and family for many years.
I sometimes unreasonably took out my anger on my spouse. I blamed him for my illness. He thought I hated and resented him. At times, he seemed more focused on what he was experiencing than what I was experiencing. He said hurtful things. I said hurtful things. I now know that I wasn’t angry at him. I was angry at the illness, at my situation. We were hurting, and we hurt each other more. It was a vicious cycle.
Because my illness monopolized our conversations, I felt like I had ceased to be a person. I was merely a disease. Our relationship felt like a side note or a circumstance in which the disease existed. It’s important to realize that a relationship may need treatment too. Actively managing and nurturing the relationship, sometimes through formal counseling during times of struggle, can positively influence treatment outcomes.
Focusing on recovery as a common goal can bring a family dealing with mental illness closer together. As we focused on treating our relationship, my spouse recognized the underlying roots of my anger and adjusted his approach. He insisted that I play a greater role in my care instead of letting me depend on him. He grew to respect and trust my concerns. He shifted from a paternalistic obligation to protect me from myself to a partner in a collaborative care plan. It made all the difference.
I had imagined my spouse much better off in a “normal” relationship. Deep down, I knew that he was deeply committed to me, but I needed to hear it repeatedly. That affirmation can be very valuable. A sense of stability and belonging can be critical to good mental health.
Not too far along into my illness, I lost all self-worth. I felt like a loser and a failure. I was hypersensitive. I felt mental illness had taken away my intelligence, even neutralized my degrees. I grieved my former self, which I believed I could never return to. I felt like a disappointment to my friends and family. I felt unloved, and worse, unlovable.
I suffered from extreme self-stigma, which led to suicidal ideation and an extended period of deep depression. I would isolate and withdraw completely. I was at times unable to get out of bed. I cancelled appointments. I missed exams. I refused all attempts by others to connect with me. Sleeping was my only escape.
Mental illness can make a person feel profoundly changed, and it’s important for caregivers to be aware of that. The shame we feel is often related to how we think we make our loved ones feel. I was deeply saddened when people in my life would say things like “you used to be so…” as it only reinforced my own insecurities and grief.
Loved ones should avoid these types of statements. For many with mental illness, we desperately want our families to regard us in the same way they did before we got sick. Caregivers should reject when we say we’re failures. They can also remind us of challenges we’ve overcome. Caregivers should validate our grief by giving hope, saying things like “I know that it’s a difficult time right now, but things will get better. These are only temporary setbacks.”
At my lows, I did not feel worthy of friendships. I had a wonderful friend, Nuno, at the time. Nuno refused to let me isolate and withdraw. Every few days, he’d appear at my doorstep and knocked until I would respond. After exhausting all my excuses, we’d go out to lunch or dinner. I’d want to talk about how I was feeling. He’d listen attentively and then change the topic. All of this helped. He never stopped coming.
Nuno is the sort of friend every person with mental illness needs. Sometimes we do not want to go out with others because we don’t believe they really want to be with us. And some of our friends may not connect with us simply because they don’t know what to say. As a person who truly cares, don’t accept the distancing. You don’t even have to talk about the illness. Just be there.
For nearly 15 years living with mental illness, my hope was fleeting. A new medication would spark hope, but a failed attempt would take it all away. I sunk deeper and deeper into depression with every failed attempt. Hope can be complicated. You yearn for it, but you fear the anguish of disappointment.
Suddenly, unexpectedly, my hope re-emerged and struck during a low point, my last hospitalization. A 10-minute video of a woman living with serious mental illness rekindled it. Hope came rushing back and filled my heart with enough courage and determination to commit to recovery. The difference this time was that I saw that recovery was possible, and that it required my active involvement in treatment. It was the tiniest spark of hope that led me to recovery.
An enduring sense of hope is the most powerful emotion of all. It can be the key to recovery. How we experience hope will vary. It can come in many forms: rebirth, confidence, ownership, responsibility, commitment, trust, discipline, self-worth, excitement, optimism, self-determination, aspiration, energy or pride. Any of these emotions can lead to recovery. The greatest challenge is finding the spark, which may require repeated and creative attempts.
It can be overwhelming to manage hope once you’ve rediscovered it. Many people living with mental illness who experience a “rebirth” want to make up for lost time. Careful goal-setting and execution is important to build on progress and minimize setbacks.
A SMART Goals approach can be extremely helpful in managing goals and expectations. For example, experiencing hope of recovery may not quickly lead to starting a new job or career. Hope grows with the accomplishment of each goal. Caregivers should acknowledge and praise new efforts. Good medical treatment and supportive relationships can sustain and support hope towards recovery.
As a recovery coach, the key piece of advice I offer my clients is that they should address the emotions their mental illness triggers first. If not, they can and will get in the way of treatment. If you embrace your emotions, and seek to understand them, it can improve both your relationships with others and your relationship with yourself.
Author’s note: I dedicate this blog post to my dearly beloved now deceased cat, Dude. For 22 years, he was an invaluable, life-saving love. Way back when I got him, I could have never imagined the critical, pure loving role that he would come to play in coping with my severe depression. He sensed it, he felt it, he lived it with me, he never left my side even when everyone else did, he never left me all alone, he rescued me many times in his instinctive caring way. I was blessed to have had him by my side. I think of him every day. He was and will always be one of the greatest loves of my life. He will forever live deep in my heart.
Katherine Ponte is a mental health advocate, writer and entrepreneur. She is the founder of ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, and Bipolar Thriving, a recovery coaching service for caregivers and their loved ones affected by bipolar disorder. She is also the creator of the Psych Ward Greeting Cards program in which she personally shares her recovery experiences and distributes donated greeting cards to patients in psychiatric units. She is in recovery from severe bipolar I disorder with psychosis. She is also on the board of NAMI New York City.
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