When many chronically ill people become chronically ill, they assume it’s just another sickness that they’ll recover from without any issues. The symptoms arise. Days go by. The doctor either blames it on anxiety or offers some medicine that doesn’t work. Months pass by. Things may be getting even worse at this point. Sometimes years will pass by before we figure out that this is something that’s not going away. It’s difficult to accept this. All of a sudden, our dreams, our goals, and what we’re physically able to do is changed. What once used to be a relaxing shower, is now a difficult task that may need assistance. Meals used to be so exciting but now it’s a difficult chore. Things become so much more difficult and complicated. Our lives are forever changed.
What makes the process of grieving our old bodies even more difficult is hearing comments about how others are waiting for the “old version” of us. As if, we aren’t the same people we used to be. In some sense, I suppose that’s true. We can’t do things that we used to do. We view the world differently now. We’re much more aware of medical gaslighting, accessibility issues, and the ableism in this world. However, that’s not really what people tend to mean when they ask for the “old me.” When they ask for the “old me,” it feels like they’re asking for me without my chronic illnesses. It makes it sound like my new accessibility needs are a burden. That makes me feel like a burden even though I know that’s just ableism.
Our friends and family are also affected by our chronic illnesses to some extent. They may need some time to better understand our current situations and that’s okay too. However, saying things like “I could never live like that” is unacceptable. Implying that our lives are worth any less, either by their words or by their actions, like deciding to leisure travel during a pandemic. If you’re a friend or family member of someone with a chronic illness, we’re looking at you at this time to see how much you value our lives. Do you say things like the high risk should just stay home and everything else needs to open back up? As if this pandemic won’t leave many people chronically ill/disabled?
It’s important for both chronically ill people and their family/friends to accept the chronic illness. Ask the chronically ill person how you can help them. Being chronically ill is expensive. Can you afford to help with groceries? Being chronically ill is tiring. Can you offer to help run an errand for us? Being chronically ill is lonely. Can you reach out and have a conversation with us even when it includes our chronic illness? Ask us what we need. Even just being told that you’re there for us means a lot.
I’m never going to be the “old me” again and that’s okay. While my chronic illness brought a lot of new struggles and difficulties into my life, it’s also morphed me into someone who has a brand new outlook on life. I no longer worry about the little things. I don’t constantly stress out about things I can’t change anymore. I put my limited energy into things that I truly feel passionate about. I’ve met the loveliest people due to my chronic illness. I’ve learned a lot about the medical field and different chronic illnesses. I’ve learned about ableism and disability rights. I don’t want to be the “old me” again. She feels like forever ago. Certain things are harder now but I’m happy with this life as well. Becoming chronically ill doesn’t mean only positive changes, but I’ve found some positive ones in my experience. If you’re chronically ill, I hope you share my sentiment. If you don’t, that’s okay too. Please just remember that no one should be pressuring you to be somebody who you aren’t anymore. I hope the “new you” finds comfort in this.
4 comments
I appreciate you speaking to these issues. I’ve been trying to talk on my blog about these things for a long time. And more recently, the issue with the way people talk about the pandemic, the ill, and “life being wasted by staying home all the time”, etc. I hope we can help more people to understand this, really understand this.
Thank you so much. I’m glad that you’re also speaking out against these issues. As long as we keep speaking and listening to each other, I’m sure others will start listening to us too.
Joanna,
Thanks again for writing your blog. It’s insightful for me. I say this because though I’ve had chronic illness for years, and am collecting more, it has been and remains a huge struggle to enable those around me to acknowledge what I can and can’t do. I am my own worst enemy in that I’m still in denial regards the full limitations of my conditions. Hence others expect much more of me than I can give. I guess an honest up front talk with each of them might help. Anyway, without being patronising, how are you doing currently? If you were in my community I’d get shopping etc.
Andrew,
Thank you for reading my blog post. I find that most of the time almost everyone tends to be their worst enemy and their biggest critic. We have to be kind to ourselves and accept our own limitations to show others how to accept our limits and our boundaries. How we treat ourselves is how we teach others to treat us. Personally, I’m also still trying to figure out how much I can push myself without consequences. I’m doing alright nowadays but hoping things can be a little bit better in the near future.
Thank you!