Felt That logoFelt That
Back to Community
My Story

Caregiver perspective: watching my wife live with chronic pain

dan_cg
I hope it's ok that I post here. I'm not the one with the condition — my wife has lupus and fibromyalgia. But I'm struggling and I don't know where else to turn. Before her diagnoses, she was the most active person I knew. We hiked, we traveled, we danced at every wedding we went to. Over the past 4 years I've watched her world shrink. She can't do the things she used to and it's breaking both of us. I feel guilty for being tired. She's the one in pain, not me. But I am tired. Tired of watching her suffer. Tired of feeling helpless. Tired of picking up the slack around the house while also working full time while also trying to be supportive while also pretending I'm fine. I'm not fine. And the worst part? I can't talk to her about this. Because she already feels guilty for being sick and if I add MY feelings on top of that... I just can't do that to her. Are there other partners/caregivers here? How do you cope? How do you deal with the anger that has nowhere to go and the sadness that has no end?

5 Replies

lisas_mom

You are absolutely in the right place and please don't apologize for needing space for YOUR feelings. Caregiver burnout is real and your feelings matter too. What helps me: having my own therapist (not just for my daughter's illness but for MY feelings about it), maintaining at least one hobby that's just for me, and connecting with other caregivers who get it. You can't pour from an empty cup and you're allowed to refill yours.

partner_pete

Fellow caregiver husband here. What you're describing — the guilt about being tired, feeling like you can't make it about you — I feel all of that. Every day. What's helped me: therapy (seriously, get your own therapist), exercise when I can, and honest conversations with my wife where I can say "I'm struggling too" without it being a competition of who has it worse. She actually WANTS to know when I'm overwhelmed. Your wife probably does too.

phil_supports

I'm in the exact same position. My partner has MS and I went through exactly what you're describing. The exhaustion, the guilt about the exhaustion, the feeling of having nowhere to put it. One thing that really helped: a caregiver support group. Specifically for partners. Hearing other people say the same things I was feeling made me realize I wasn't being selfish — I was being human.

kat_shade

As the person with the illness: I want you to know that your wife would want you to take care of yourself. I know because I've told MY partner the same thing and he gives me the same guilty look you're probably wearing right now. You taking care of yourself IS taking care of her. If you burn out, you both suffer. Please find something that fills your cup.

watching_and_learning

I'm a parent caregiver and everything you said resonated. The feeling of being tired and guilty about being tired is THE caregiver experience in a nutshell. Please don't keep it from your wife forever though. My biggest regret is hiding my burnout from my family until I completely fell apart. They would have helped me sooner if I'd been honest. Your pain matters too.

Leave a Reply

Join the conversation

Just your email and 30 seconds. No hoops, no hassle, no spam.

Sign in to reply