Life with chronic illness can be rife with complicated decisions. Many come with the added weight of grief — do I give up something I love or keep doing it because the emotional loss will be worse right now than the medical consequences?
This is an ongoing process, as each year brings new changes of health and perspective. One such choice has been growing more prominent for me this year: should I move in with my parents?
The benefits would be significant.
They know my health needs better than anyone, and are rock stars at helping me through the tough moments. Living together would make it easier for them to help me with things like laundry or cooking, without them having to travel to come help me out. Not only would it take away some of the burden when they want to come help out, but it would allow me to more easily pitch in for them on good days, to buoy our relationship. My partner is wonderful, but the majority of our visits to couples therapy have centered around illness in one way or another. It is a constant strain.
While I am proud of how we weather it, I long for a life in which the weight doesn’t rest solely on the two of us.
Financially, this move makes sense as well. I cannot work 40 hours a week without health repercussions. One of my medications costs $650/month. I spend thousands each year on care. Sharing housing costs with my parents provides stability and ease.
All of this is compounded by our plans to start a family in the coming year. As I visit with my nieces and nephews, I feel a stab of fear each time I am too sick to interact with them in a loving way, too weak to lift them, or too exhausted to get up in the night when they cry. I genuinely don’t know if I could do this alone. I am blessed to have a partner taking this step with me, but, again, the thought of all of this falling to him breaks my heart. I feel less panic, knowing that my newly retired parents (who LOVE time with grandchildren) will be so close.
I’m coming up on 30. I’m married. I’m doing my very best to feel like an adult. As much as I love my parents, and feel incredibly privileged to even have this option, it feels like a last resort, one that I never imagined I’d take.
With quarantine, my partner’s work closing, and a variety of factors, we finally knew it was time. A week ago, I moved back into my childhood home, into the bedroom with a hot pink rug and butterflies dangling from the ceiling.
I fear for my independence.
I’ve been fiercely independent since childhood, and took pride whenever someone noticed this quality. I will admit my ego is concerned — what will people think of me? Will they think I’m lazy? Mooching off my parents and only working part-time? Will I be seen as less of an adult? These voices shouldn’t influence my thinking, but they do. I find myself justifying it whenever someone asks where I’m moving to.
I’ve heard from many — chronic illness warriors, and just people whose finances have been hit hard these last months — who are making this move. In remembering I’m not alone, I wanted to reach out to see what we could learn from one another’s experiences!
Here are some thoughts from a few of my Friends in the Fight:
I’ve struggled with a lot of shame and embarrassment about living with my parents. The main reason for me is cost, as I haven’t been able to work full time since my TBI (traumatic brain injury), and I’ve been discriminated against because of my disability for part time jobs, meaning mostly I do contract work. I worry about people’s judgment but it really has been amazing in terms of allowing me to work less and still have some leftover energy to live my life.
After COVID began, as an immunocompromised person, every aspect of my life fell onto my partner’s plate. Things like going to the grocery store, pumping gas – EVERYTHING. Even with us being careful, because we live in a densely populated area risk felt high. We decided to leave home and go to my parents’ in southern Vermont to have support navigating life in a pandemic.
It was weird because I felt so pulled in two directions. I was hyper aware of how special it was to be spending time as adults with my parents and siblings, to find the love and positivity — but also felt incredible shame and frustration in the fact that Calvin and I (who were just getting into the rhythm of creating a life for ourselves) had to take a step back. We were married two and a half years ago, and had actually moved away from family to start our life as a couple. There was no place for us or our relationship in such a full house.
For anyone considering this, know that it will be both incredibly empowering and also challenging. Give yourself and your family grace and understanding where you can. Living with your parents is a weird bumpy ride and it’s not what anyone expected. Open communication and advocacy around building routines and practices that are productive for the life you were living before will make it a healthier move for everyone.
I have EDS, POTS, NCS, and hip dysplasia and began using a wheelchair part-time a little over a year ago. I have good days and bad days like most people with chronic illnesses. Until a few months ago, I was managing fairly well on my own. Then my pain got worse again to the point where it could trigger near fainting episodes when I stood up.
I was scheduled to have surgery to attempt to improve my pain last month, but because of the pandemic, that had to be cancelled. It was then that I realized I wasn’t safe living at my apartment anymore. At 26 years old, that’s one of the hardest things I’ve ever had to admit to myself. But, my independence was already gone. I couldn’t even shower safely on my own anymore.
I felt like I was failing at adulthood. I didn’t want to be that stereotypical 20-something moving back in with their parents. I was proud of how hard I worked to maintain my independence. But I had to let that pride go to put my health first.
I’d say if you’re considering moving in with family or friends due to your health, think about the things they can and cannot help you with. If you struggle to grocery shop and they can do that for you, great. If you need help financially, but they aren’t able to help much with that, maybe there is another option. For me, it came down to safety. My parents can do what makes me flare the most. They can be there when I shower in case I need help. Living with them filled the needs I couldn’t take care of on my own.
Want more? Check out our tips for finding joy in relationships through illness!