Update and Change

I’m in the process of yet another overhaul. While I’ll keep this blog up for posterity and try to update some of the less evergreen content at some point, I want to work on really developing a practical toolkit for the mental health issues that come up with chronic illness/transplant/and rare diseases. I want to make it practical and accessible to people. I’m not sure what form it will take or what it will contain, and what format it will be in – a book, ebook, running a blog, or all three but I’ll decide that as I go. The time has come for this because so many organizations are restricted in what they can say or what they can talk about as far as mental health aspects and daily life. So much support and even social workers or counselors advising on mental health issues on the day-to-day have all but disappeared. Even the research is so narrowly focused it sometimes forgets impact and quality of life aspects.

This leaves whole swaths of people unsupported. I realize with some of this there is a fine line between giving medical advice and supporting but going after my Masters has helped me discern this more.

Everyone has different needs but there are tools or things that can help that people can do for themselves and should not be gatekept for professionals and people in higher education environments or a therapist’s chair. Not everyone can afford therapy anymore.

Furthermore, with COVID still being at high levels, it’s still hard for people to meet in person for support. Some people have Zoom burnout or fatigue, and some have difficulty taking notes or distilling the jargon around a technique or tool even if a therapist or other professional provides it.

I tend to freeze in crises but the key is I know why and now have some tools to attempt to take the edge down so at some point even with a good deal of work, I can work my way out of it. I’ve tried a lot of different modalities and treatments for mental health and what resonates with me and what did not. What worked for a while, then stopped, and what was outright not a good fit for me. My issue like others is consistency, remembering, and practice.

Admittedly, some of the energy medicine techniques I employ now I scoffed at in the beginning and resisted for quite a while when others I knew were attempting to show me. When I put my ego aside and gave them an earnest effort some of them became powerful adjuncts (supports).

People need this. It’s a big glaring and gaping hole in the system. With healthcare being so fragmented and broken, we have to keep our wits and sanity with us somehow to survive the constant gaslighting we are subjected to by the medical community. No one addresses this head-on and it’s time we do.

Also, our caregivers and friends also need these tools because it is hard to watch someone you care about go through so much.

Self-advocacy is an uphill climb these days, but it’s not insurmountable. Much like me compiling all of these tools is a daunting and big task that will take time but will benefit me to retain my practices or provide suggestions to try in different situations to calm my nervous system. I want to sift through it all and provide ample tools for everyone, including myself.

I promise not to have phrases like “calm down” or “breathe” either. Most people find this to be not only trite but also offensive because these are the very difficulties they are confronting breathing issues (like hyperventilating for example), or a flood of anxiety flooding their entire body in stressful situations. Also when these things are said people are not tuning in or supporting to figure out what is at the root of the problem.

I find when I have a settled mind, it’s easier to deal with the challenges that come up. If my anxiety is controlled I can be free to be myself. I still have my bad days of course, but at least now I don’t feel copeless. Having even a few tools is so much better than trying to fumble through by yourself.

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