This is a part of a series of posts briefly summarizing conversations amongst a group of loves ones I brought together to talk about chronic conditions. None of us has the same situation but all of us work to be present and kind with what comes up. We spoke once more for around 2.5 hours and I increasingly feel that we should just set that as the normal timeframe for these needed chats. Here’s what we covered at a very high level.
- The fallacy of control around what makes us feel better vs worse and the ways being off a little can cost a lot or how sometimes you just magically feel better.
- The overwhelm that comes with trying to map out medical options where some things need to be staged and some things to pursue can improve one aspect while worsening another.
- How difficult yet important accommodations are in the workplace and how it can be hard to ask for them until you’re in a place where you’ve “proven” yourself.
- How FMLA doesn’t line up for chronic conditions. Taking three months off will make things easier for those three months but it won’t do anything in the long run when the problem itself causing FMLA doesn’t resolve within that timeframe.
- How proving yourself at a job can help make you feel safe and the difficulty in shaking off being a “high performer” due to the safety net it provides.
- The vulnerability of relying on specific mechanisms for care and how, if those mechanisms are gone or hard to get, it can feel SO upsetting. This includes medication and supplement delays.
- How hard it is to make new relationships and explain what’s going on. When do you bring it up? How much do you have to educate? It can feel easier to again “prove” your worth before expressing needs rather than filtering people based on how they are able to embrace needs and respect boundaries.
- How horrible it is to get sick on top of chronic health issues already. When every day is already hard, getting “normal sick” can feel extra infuriating.
- How for some of us on the call it can feel safer to be in a group because it doesn’t matter if you leave whereas it’s more intense to leave a 1on1 hang.
- How for some of us it feels like something that will never go away and something to live with, nurture, consider, embrace, etc.
- How hard it is to navigate when it’s worth it to push oneself, emotionally or physically, to create broader understanding. In particular, I’ll note that I talked about this in terms of surrogacy-stories.com and whether it’s worth it to continue to share there or if it’s just a big emotional cost with limited returns.
As always, it was a time of sharing and taking space–a sacred balancing act of witness what is for each other.
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