I will start this story with the day we met. We were walking to a restaurant to enjoy each other’s face-to-face company when I was compelled to reveal the fact that I was diagnosed with bipolar disorder. She seemed taken aback to which I attributed her reaction to stigma. I found that I had my own misconceptions about her after when she explained that her father was diagnosed with Bipolar Disorder. Little did I know that her experience with mental illness would color her own lived experiences.
I remember one night, I’m not sure how this came about but we started to discuss institutionalization. Her father was institutionalized and I was hospitalized, an experience that still haunts me. I angrily stood my ground as she tried to explain how he was beyond her help. I screamed, “how can you institutionalize your own father!?” Little did I know the effects her father’s behaviors had on her.
It was in the way she would answer the phone. In a panicked frenzy, she would answer with an abrupt, “what?!”. I would laugh it off. Then, after we were married, I noticed she would wake with a start almost every night, in a cold sweat. I would angrily turn over. And when I was hospitalized, she began using her top-down brain, the only way she could think under pressure, to attempt to fix the situation. And 4 times a year, almost religiously, she would have a panic attack and require benzodiazepines to mediate the symptoms.
The actions began to add up: my wife was struggling. She was experiencing PTSD. And my mental illness was her primary trigger.
I knew I had to put away my own pride, beliefs, and fears to go to her level. She was struggling, and it made it worse every time I angrily shouted back. I had to be mindful and listen to her words rather than taking it as an attack. But how else can someone with a mental illness care for someone? Especially someone with a mental illness? While searching on the topic I found that the consensus was that you cannot be mentally ill and care for someone, anyone. No, you must be taken care of.
This persistent stigma doesn’t help anyone. Both parties are in need of assistance, care and support. But how do you become the caregiver when you are someone with a lived experience? I will go over a few things that have helped me and that also generally help caregivers.
1) Practicing self-care
I think we have all to some degree heard about self-care. It’s encouraged everywhere. Drink some tea, take a walk, write in your journal… Those are all excellent ways of practicing self-care, however, self-care doesn’t just stop there. Self-care is taking something you enjoy (that is also meant to nourish you) and using it as a moment to replenish your batteries. As someone with a mental illness, self-care is important. As someone who is a caregiver, it is just as important. For example, I practice self-care by blogging, making videos and doing my make-up. All things that I enjoy personally and help me feel ready to take on my caregiver role.
One of the most important ways to practice self-care is also to set boundaries.
2) You need to set some boundaries
As someone who has had issues with boundaries in the past, I can attest to the fact that setting boundaries (especially with a loved one) can be difficult.
So, first, what is a boundary? A boundary is setting a line of what you feel comfortable with and that is preserving your health, all in the goal to protect both parties. But boundary-setting is a skill. It isn’t as easy as someone might think. Especially when the other party is someone you care and love.
How do you set a boundary? Identify your feelings. Mindfully become aware of where the source of those feelings is. Listen mindfully, without judgment, to those feelings. Name your limits and be clear with your demands. Give yourself permission to set these boundaries.
But giving yourself permission may be the most difficult thing. When the second party responds, it may feel as though setting the boundary is doing more harm than good. But by giving yourself permission to feel what you feel and understand that by setting a boundary you are protecting both parties.
3) Maintaining independence
Independence is important and during a crisis, it is easy to fall into the trap of impeding on someone’s autonomy. Related to setting boundaries is developing a plan. When in a crisis, we try to do what is best for our loved one but sometimes it is perceived as encroaching. But planning with your loved one and setting important boundaries before a crisis occurs can eliminate this from occurring.
Setting goals are also very important to maintain autonomy. Focus on mutual skills to set a goal. Maybe you would like to focus on doing a certain task while understanding your loved one’s own goals and communicating these goals will avoid conflict and misunderstandings. Having open and honest dialogues helps clear any misconceptions.
4) Focus on the now (be mindful)
It’s very easy to live in the past, certainly while mentally ill. When you are communicating with your loved one, bringing up past arguments or crises just simply doesn’t help. As a caregiver with lived experience, being mindful of what your loved one is saying, being present, and listening without judgement, is important.
5) Understanding that roles are fluid
Roles in society, and in particular in a family, is fluid and can switch at any moment. Being open and aware of switches in roles is important to understand when you may need extra care and your loved one can provide that support for you.
Also understanding when someone can provide care. When someone with lived experience may need extra care, it is possible that their loved one may still be in need of care. You can step down from that role, even momentarily, and find care for yourself, even if that means looking elsewhere for support.
The references below provide more help but be aware that they do not discuss when someone with lived experience is the caregiver. A caregiver with lived experience provides an extra challenge to assist your loved one. However, finding support and creating a space for open dialogue will help. I hope these tips have provided some ideas!
Featured image: Joe Niekro Foundation