Finding a balance when you’re both the patient and the caregiver

My sister, Mimi, and I both live with porphyria, a rare disease that can cause debilitating attacks and require significant medical care. For me, porphyria can mean severe abdominal pain, nausea, body aches, and a range of other symptoms that can make everyday life difficult. Mimi experiences many of the same symptoms, but her attacks have also involved paralysis along with neurological and psychological symptoms.

Since I also have porphyria, I understand the challenges Mimi faces, and I can help her in ways that someone without that firsthand knowledge might not be able to. I know how scary it can be when symptoms worsen and how painful an attack can be, and I can help her navigate those attacks and get the care she needs.

My mom and I share responsibility for caring for Mimi. We help her navigate day-to-day life, and when she has a porphyria attack or experiences symptoms related to her other health conditions, we make sure she gets the treatment she needs.

But while juggling Mimi’s care, I’m also managing my own symptoms and health issues, and recently, we were reminded just how complicated that balance can be.

Giving and receiving care

Mimi and I both have ports to manage our porphyria, and within a week of each other, we both needed them removed — for completely different reasons. Mimi needed hers out because of a device malfunction. But then my port needed to be removed because of a possible infection!

Procedures are especially hard on us. Porphyria, along with our other conditions like adrenal insufficiency, can make recovery difficult, and the stress of a procedure can even trigger a porphyria attack. So we were now dealing with two medical procedures and the two recoveries that followed, in which both Mimi and I needed extra care.

I needed to be there for Mimi through her procedure and recovery, but I was recovering from my own as well.

It was a reminder that when you are both the patient and the caregiver, the patient takes the spotlight uninvited, leaving the caregiver in the dark even when she’s the one who should be leading the show.

You need to be there for someone, to take care of them, but sometimes, your own health has other plans, and you’re not physically able to help. So how do you balance being a caregiver with needing care yourself?

I’ve learned that there are times when my health limits what I can do. And when Mimi and I are both dealing with medical problems, she can’t always rely on me in the ways she needs to.

That can be difficult when I know exactly what she’s going through and want to help. Being both a patient and a caregiver is hard, especially when the person I’m caring for is living with the same illness I am. There are times when Mimi needs me, times when I need support myself, and times when we’re both dealing with more than we can manage on our own.

Fortunately, Mimi and I have a support system that extends beyond the two of us. Mimi has our mom and me to help care for her, while I have my partner, Matt, and our mom. When my health is particularly difficult to manage, Matt can step in to support me.

Having that support doesn’t make living with porphyria easy. It doesn’t prevent attacks, eliminate medical complications, or guarantee that either of us will always feel well enough to do what we want. But it does mean we don’t have to manage everything alone.

I’m grateful we have people in our lives who can step in when we need them. I know many people don’t have that. Mimi and I may share porphyria, but we also share a support system. And when I need to step back from being the caregiver and be the patient, I know I don’t have to face it alone.

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Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.