Carving Out A New Care Relationship

Some folks in the community may remember that I previously wrote about my long time caregiver and partner leaving, after a season during which I'd gotten very sick with comorbidities including migraine. One of the reasons they cited for leaving during that time was having to give so much support to me as a person living with multiple chronic conditions while not being able to pour into them-self. It took me many months to fully understand and cope with that loss, and many more to viscerally understand how difficult being a caretaker can be.

This very vulnerable experience was one of the most difficult I have ever undergone, and dealing with heartbreak on top of physical pain was dark and seemingly endless. I am writing now because my partner and I have been reunited for about half a year, and our relationship is wildly different than it was during our previous seven-year relationship. Here are major differences that have contributed to a more healthy balance in our life now, that I think are so important in maintaining positive and reciprocal support for folks whose main caregiver is also their partner over the long term.

Reciprocal communication is key

I can not stress how important of a lesson this has been for me, and my thinking around this has totally evolved. I thought when it came to migraine that I was a star student communicator. I used to really focus on communicating my needs clearly and concisely to my caregiver and partner, but my needs were always first. “I’m the sick one” I thought, and so while I would make sure I was really thorough in expressing my needs to be taken care of, I failed to see just how much I lacked in receiving that same kind communication back.

This is tricky and difficult, especially when pain is involved. When dealing with a migraine, I rarely had the space to receive much at all, and I know my partner often did not communicate their needs because I was the priority. It went on like this for years and years.

Not taking a partner who cares for me for granted

Now, we have had more explicit conversations about both of our needs. I ask specific questions about their ability to support me often. One particular point of growth has been more explicit communication about what it means to take care of someone with multiple chronic conditions from them. There are things I now know explicitly that my partner can’t do, and things I have realized I can be more aware of, like their fatigue, that informs our everyday relationship. I wrote before about how sometimes those closest to us can be default caregivers, like mothers and partners, by circumstance. I now do not take for granted that having someone in my life who chooses to care for me is a privilege not shared by everyone.

Learning to cope with migraine independently

Being apart really forced me to figure out how to manage and cope with migraine in ways I never had to in the previous seven years. Whereas I was used to being able to call on my caregiver to help with everyday tasks, when I was alone I had to really fight to stay well. There were many days where I had to wait out migraines in my car because I was unable to drive, or where I had to (gross alert) sit near my own vomit due to migraine induced nausea for a long time because I was too ill to get up and clean up. There were many days where I had to make a way despite not really knowing how I would.

Taking responsibility for much more of my own care

In the past, I could call on my caretaker and be taken care of quickly. I had to become more responsible for eating regularly, drinking water regularly, planning meticulously in case of an attack, and the act of comforting myself when dealing with dark thoughts about my ability and lack thereof with migraine was a huge task. I gained a deep appreciation for my own strength and ability to continue on, and a huge awareness about how difficult it is to live with this disease without a close caregiver. I know that many in the community experience this and I know it is not easy.

Out of the darkness though, I became so much more independent and so much more meticulous about my own health, because I didn’t have backup. Now in consideration of my own strength and my partner’s well being, I still make sure I am doing my best to take care of myself and them.

Caregivers need care, too

I was recently in conversation with another caregiver, who confided in me some of the struggles and appreciations they had over time. As I listened to them talk, I remembered that my own partner shared some of the same experiences. Even during the moments when it feels like the only thing I can see is migraine, I now try to position myself to acknowledge that folks who care for others have their own struggles, too. I now take a lot of effort to see them fully, beyond the care they give to me. In the ways I can give attention to and care for my own caregiver, I try to do those things because I know how important it is.

Now that I have had so much time to reflect on making sure both myself and my caregiver are well supported equitably, I feel better equipped to avoid missing out on communication and reciprocating care when I am able. I feel lucky to be able to work together with them on making sure I am cared for and well taken care of.

Have you dealt with tough changes with your partner or loved one due to strains on your relationship because of migraine? Let’s discuss in the comments!