How to ease caregiver burnout in romantic relationships
Not only the person with a disease feels the burden of it
February is often known as the month of love. That makes it an interesting time in the sickle cell community, as I often see differing viewpoints on how to approach dating with the disease. This week, I’ll be speaking on Instagram about love and sickle cell.
To prepare for the event, I reviewed some of the planned questions. One asks how we with sickle cell can ensure that our partners don’t suffer from caregiver burnout.
This query stuck out to me because I’ve never deliberately thought about how to protect a caregiver in that way. I’d always viewed sickle cell as my burden, feeling it was solely my problem. But this burden is shared with those closest to me, as well.
When I think about my longest-serving caregiver, my mother, I see that she could’ve experienced caregiver burnout in many moments of my childhood, from the numerous doctors’ appointments, to the phone calls from school reporting that I had a crisis, to my overnight stays in the hospital. So now, when I’m more independent, how can I apply these reflections to my romantic relationships so my partner doesn’t get burned out?
Understanding sickle cell
Sickle cell is unpredictable, and a crisis can occur at any time. It must be strenuous for a partner to gauge when they need to provide support. Since the most significant expert in managing my condition is myself, I must explain to my partner what my possible triggers are, how sickle cell affects me, and how I can be realistically supported.
A partner, in turn, will need to be receptive to this information. Understanding sickle cell will also allow them to manage their expectations and understand how to provide the right kind of support without feeling overburdened. Working together to manage sickle cell will create the right balance for both people in the relationship.
Communication
When I’m having a crisis, it takes work to communicate what my needs are. It’s also difficult to consider anyone else’s feelings when I’m dealing with such pain. But caregiver burnout can stem from poor communication. Thus, consider having discussions before and after a crisis. These can lead to appropriate planning, which can ease the psychological burden of ineffective communication when a crisis eventually occurs.
Partners will also need to feel comfortable expressing themselves positively and negatively, and it’s not easy to create a safe space where they can say things like “I’m struggling” or “this is hard.” Partners’ feelings are valid, and they’ll need time and space to process them to avoid burnout.
Prevention
I always needed reminders to take my medication, because I sometimes left it at home. Being this irresponsible meant that I experienced crises in the most random locations, which was stressful. Over time, I’ve improved at carrying my medication and looking after myself. Ensuring that I’m responsible for my mental and physical well-being means I’m in the best shape to prevent unpredictable crises.
Constantly carrying my medication around doesn’t mean I’ll never have a crisis again, but it has reduced my hospital admissions. Taking control in this way means my partner will have less to worry about. I may have a crisis unexpectedly, but we’re prepared if that happens.
Taking breaks
Sometimes burnout can creep up without any warning, yet taking a break from your romantic partner is frowned upon. In my case, however, I’m referring to taking a break from sickle cell. Talking about the disease and its complications can often be overwhelming for those of us with the disease. It could also be overwhelming for a partner; after all, before meeting us, sickle cell wasn’t a significant factor in their lives.
Taking a break from talking about sickle cell or doing things to break from everyday life could prevent burnout. Of course, sickle cell will always be a part of the relationship, but it can be something other than the main focus of everything you do together.
Unfortunately, considering these points may still not prevent caregiver burnout. But they should reduce the number of times a romantic partner feels burned out, and that’s a step in the right direction.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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