Through the two decades my spouse has struggled with bipolar disorder, I put aside my needs for hers. I have been her primary caregiver from the beginning. We have gone through five manic episodes and three hospitalizations, together. Each time required us to “rebuild” our home, back to stability and normalcy.
Since her first manic episode, I have put her needs for stability ahead of everything else in our life. I have been her monitor and guardian. I have helped her through her lows and pushed her to realize her potential. And I have often forgotten about myself in this process.
Over time, I learned this mentality was wrong and counterproductive. Because I gave up so much of myself, I resented my spouse. I grew distant from friends and family, in part due to the stigma of her illness and fear that they would not understand.
Between looking after my spouse and work, I had little, if any, time for other activities. I bottled up my emotions. I tried to numb myself. It seemed like the best defense mechanism when faced with a volatile situation, like one of my spouse’s manic episodes. But stress and anxiety were always percolating and would intrude on me at work and in social interactions.
Eventually, my spouse found hope and the path to recovery. As she has taken more responsibility for her condition and life, it has made me realize the importance of caring for myself as well. She has encouraged me to do more for my health and enjoyment. So, I am taking care of my number one now — me.
Focusing on my self-care has been my own recovery process, one that has paralleled my spouse’s. I think of it in terms of three components:
Redefining My Role as a Caregiver
I stopped feeling like my spouse’s health was all on my shoulders. By letting go and allowing her to have more control of her treatment, I was able to transfer primary responsibility while still playing an important role in her care.
I stopped waiting for disaster to happen while recognizing the risks of future episodes. I learned more about how to manage and prepare for those risks. I learned more about her condition, triggers, symptom monitoring, coping strategies and prevention tools. It was essential to develop a strong “working relationship” with my spouse and her doctor.
I now feel less stress. I wait for signs of emotional swings instead of looking for them constantly. My spouse and I have an agreement that I can alert her and her doctor when I spot warning signs of a potential episode — and we have a plan if that happens.
For years, I couldn’t help but partially blame myself for my spouse’s early hospitalizations. I had made the 911 calls. Over time, I recognized that I hadn’t had a choice, but the guilt lingered. And while she refused her diagnosis, she partially blamed me as well. But no more. Being a caregiver can be a very difficult situation, with lots of sacrifice and difficult choices. I have finally accepted that I did everything as best I could to help her. I also appreciate more and more that I am doing something special. And she agrees.
Prioritizing My Health
For years, my spouse’s health took priority over all else. In particular, I put aside my own mental health to focus entirely on hers. After all, I was the stable one, the supporter. This was foolish. In fact, her episodes had been traumatic — for both of us.
I felt that our family, professional and social lives had been suspended. It caused me insecurity, anxiety and depression. And I did nothing about it. Finally, as my spouse became more focused on her treatment, she encouraged me to do the same for my emotional health. Now I have seen a therapist for years. It has given me great perspective on my life and armed me with coping strategies and tools to improve and protect my emotional health. It has also made me a better caregiver. Our discussions have enabled me to better understand her perspective, but also to prioritize my role in our relationship and my own life.
I have also focused on my physical health. As a caregiver, I often felt a lack of control over my circumstances. I was at the mercy of my spouse’s illness, so I felt vulnerable. The emotional toll also affected my energy, strength and resilience. But I grew more positive and optimistic as I saw my therapist. It encouraged me to pursue well-being in other aspects of my life. I started to go the gym regularly. I focused on my diet. Over time, I reduced alcohol consumption. I started getting more sleep. These changes, very gradual at first, all give me a sense of control over my body and self.
I have created space for myself not only in exercising but in a range of other activities like reading, spending more time outdoors and pursuing new hobbies. These activities allow me to engage with my own interests. They help define who I am beyond caregiving.
Izzy Goncalves works in finance and has been the primary caregiver of his spouse who lives with severe bipolar I disorder with psychosis. He has been instrumental in helping her develop a number of mental illness recovery initiatives, including: ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, Peersights, a mental illness recovery coaching service and thePsych Ward Greeting Cards program which shares lived experience of recovery with and distributes donated greeting cards to patients in psychiatric units.
Creating this space is also establishing boundaries as a caregiver with your loved one. I admit this is an area where we continue to struggle, particularly with my spouse’s mental illness advocacy, non-profit and entrepreneurial activities. It is easy to talk about mental illness all the time, which can be extremely draining. We need to take more mental illness time-outs. This can include agreeing to talk only about other subjects during dinner or parts of the weekend. Disengaging from the topic of mental illness can allow the mind to refresh and revisit the issues with more clarity and calm.
Additionally, creating space means engaging with other people. Part of coming to terms with my spouse’s condition, and my caregiver role, has been to open up to friends, colleagues and family. I have re-engaged with relationships I had allowed stigma to quiet. I have removed the weight of stigma.
By talking about my experience, I have also discovered the shared experience of people dealing with similar issues in their lives. I personally have felt the power of support from other caregivers and loved ones.
Nurturing these relationships also helps create a network of support and understanding. This network can help keep out the forces of anxiety and depression. It also helps strengthen my role as a caregiver.
So take care of yourself. It is not at all selfish. In fact, it will make you an even better caregiver. But most importantly, it will help achieve the fulfillment and wellness you deserve.