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PEMprincess

674d

Everytime I have to cancel or rearrange something that was important because of my health conditions/symptoms, it takes a toll on me. I wish when people heard this, that they’d meet me with empathy, encouragement, or much needed help to try and provide some relief. Instead I’m met with disappointment, suspicion, or disdain and it makes things worse for me symptom wise. I’m constantly thinking of how I can make it up, or on how much I have to miss out on or do “differently” (commonly meaning seldom or not at all) and it’s really taking a toll on me. No school, no work, this no financial stability, strained social life, estranged from half my family with ableist views, limited support, difficulties with basic tasks, irregular basic human bodily functions, constant disappointment, biggest dreams n goals interrupted/on hold. How do I cope with all this when I’m just tired of coping

    • Gracie1217

      674d

      Oh friend, thank you for posting. It sounds like you're feeling tired, left out, and unsupported. You're not alone in feeling everything you're feeling. It's really, really hard to manage all the things life seems to demand or require, and it's totally okay to acknowledge that it's not fair how much extra work we with chronic health conditions have to do compared to everyone else. I'm wondering if you might be able to start building a support network of your own, friends and doctors and a therapist or counselor who will be on your side and in your corner and who will have your back. I can also say with total honesty that one of the kindest most helpful things I've done for myself (with therapy support, granted, but there are tons of resources online too) has been to learn to practice self-compassion for everything I'm experiencing and feeling. I'm a beginner at it still; when I do practice, however, I feel very much like I'm safe with myself and that I've got my own back too, if that makes sense. 💕

      • PEMprincess

        674d

        @Gracie1217 Thank you tremendously. I am certainly feeling those things. Not even so much unsupported but under-supported, which is significant bc it triggers a feeling of guilt that I’m frustrated at others for something that’s no one’s fault- or jealous that “everyone else” has such ease and the luxury of having help to offer. This can make it difficult to be patient with myself in rlly hard times when I feel I should simply be ok with what I’ve got/be able to do more. I’m usually okay, but there are days like today, where I’m imagining my life will be based on constantly pacifying myself instead of living the way I was on track to before, or on any track that’s fulfilling to me for that matter. Have you been able to establish a routine & any reliable physical/financial independence and stability? What are some of your favorite ways you practice self compassion? Especially the moments you’re feeling like you’ve got little left to give.

        • Gracie1217

          674d

          @PEMprincess Self-compassion has been so helpful for me. I can't recommend it highly enough. I'm actually going to recommend you to a woman named Laura Banks, who teaches something called Compassion Cultivation Training, designed by experts at Stamford. She's the sweetest person, and her facilitation of that eight-week training was my touchstone for jumping off into my own continued practice. A lot of self-compassion for me looks like actually talking to myself, addressing myself and my emotions directly. I use gentle terms of endearment and express support and empathy for what I'm feeling and going through. If I'm having a bad day, for example, I might take time to reassure myself: "It's okay to feel this way, sweetheart; of course you're tired and drained." That kind of validating self-talk, just really tender and kind, helps me a ton. Sometimes it also helps me to imagine I'm supporting a dear friend, or a young child who's feeling all these things; what would I say to that person? There are also self-compassion mindfulness practices, which you can find on YouTube.

        • Gracie1217

          674d

          @PEMprincess Financial independence is still a thing I'm working towards. Right now I do some piecemeal freelancing in various things when I have energy; I'm working with a physical therapist to stabilize my system to where I hope to be able to hold down consistent work even part time and/or remote; I'm working with a dialectal behavioral therapist to build my skill sets for managing the things life demands. I'm blessed for now to have temporary financial support from family, though not much support from them in other ways; I have to get that from my own support network.

        • Gracie1217

          674d

          @PEMprincess You're so welcome. Sometimes it helps to hear that you're not alone and that your feelings are totally valid and make perfect sense. Of course you're feeling under-supported and drained; anyone would be in these circumstances. Normalizing it has been a huge help for me. I do live on my own, and I've established a sort of flexible routine, if that makes sense; I have a list of chores that I try to cycle through every week to two weeks and when I have energy and can focus, I look at the list and pick the one or two that sound most doable and get those done. I also build deliberate chunks of time in my schedule, and sometimes whole days, where I have absolutely nothing planned and nothing required of me, which helps me restore energy and focus.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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