If you or someone you care about has a chronic illness, especially one that no one seems to know much about, one of the most useful things you can do is follow patients who post about that illness and/or chronic illness in general.

You can learn more about current research and other important information from patient advocates on Twitter (and Tumblr) than your doctor is likely to directly tell you. Some will post about current research on the illness. Read the articles they link and read and try to understand the published research studies.

(Pay attention to the sample sizes of the studies - the smaller the study, the bigger grain of salt you should take it with - and be wary of news articles that talk about potential cures or treatments without a published research study to link to.)

Patient advocates are often some of the best informed people about illnesses that most doctors don’t know much about. Many of them attend medical conferences and have learned enough to understand the published research.

On top of that, it can really help a sick person feel less alone to see other people sharing similar experiences, and if you’re a loved one of a sick person you’ll be able to understand more about what they’re going through.

I have ME/CFS, an illness that’s really not understood by the general public. Patient advocates have helped me find out way, way more about what’s going on with my body than any doctor. They’ve helped me know about and understand important research journal articles that helped me understand the right ways to handle my illness, and gave me hope with news of drug trials that I never would have heard about otherwise.

And my amazing partner, who is on Twitter and who is the one finding a lot of this information, knows so much better how to support me because she’s well-informed about what I’m dealing with.

Venture

I’m so grateful I got to enjoy a visit with the kids recently. It was so wonderful to hug them and bask in their presence. We went to Meow Wolf! I was more active, and it felt amazing!After doing loads of research and reading, I discovered a medication and supplement that is helping with Long COVID. This book, in particular, was extremely helpful.…

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Long COVID is like ME/CFS

Long COVID is like ME/CFS

Hi, y’all! I’ve not been making videos because I’ve been looking after my health. Over the summer, I have been resting more. I last made a batch of videos in May. I’ve been struggling with Long COVID since falling ill on Feb. 25th, 2020. The first year was not as bad. I even had six months after I got the J&J vax when I was almost totally well. Then Nov 2021 I relapsed, and it’s been worse ever…

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Aging and Discernment

Something I love about being older is my ability to discern what’s important and worth my energy. Looking back on my life, I see how much pain I went through wasting my efforts on insignificant things. I believed things that weren’t true, agonized over reaching perfection, and was ashamed of my physical appearance, and minor mistakes I made. Now I know it was nonsense. But I didn’t know any…

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Being Grateful

Gratitude is a practice I do daily. I can always find something to be grateful for and it uplifts me. On most days, it keeps me positive and hopeful. It’s not a cure-all, nothing is, really. Though knowing my loved ones are safe, happy, and well comes close. Being grateful is another way to keep me resilient and focused on what matters most. For me, what matters is living life well, by…

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Coping With Eco-Anxiety

Humans have always been worried about natural disasters and the world’s end. Lately, though, it’s feeling like it’s getting increasingly out of control. The environment is degrading faster than predicted because of climate change. It’s only logical to want to help prevent further destruction? But how big of an impact can one person make? It’s not up to the individual to create this huge…

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Long COVID Risk

People are behaving as if the pandemic is over? It’s alarming to me because my life has changed drastically because of Long COVID. Here I am, over 27 months later, still sick. Anyone can end up with Long COVID. You can have an asymptomatic COVID-19 infection and still suffer from long COVID. There are millions coping with long COVID. It can debilitate and devastate. There have always been…

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Why Not Just Leave?

Why Not Just Leave?

I know, I’ve thought it before…”Why don’t they leave?” My perspective changed when I learned more about abuse and realized people had abused me and I thought it was normal behavior? I tried to deny it and talk myself out of what I realized. But once you become aware, you can’t take it back. You know the truth and it’s hard to minimize and make excuses or justify the abuse anymore. Instead of…

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Narcissistic Mind Games

Manipulative people are emotionally immature and have a fragile sense of identity. If you try to hold them accountable for their abusive behavior, they will defend themselves because they can’t admit they may be wrong, or that they have faults. When you address problems with them, they will play mind games with you and bring up the past, antagonizing and attacking you, so they put you on the…

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Jekyll and Hyde Personality

Jekyll and Hyde Personality

If you’re in a toxic, manipulative relationship, people may not know what you are truly experiencing. Manipulative people are skilled at hiding their abusiveness in public. They may charm and be well-behaved in front of others, but are abusive at home or in private. If you inform others about what’s really happening, trying to get help, the abuser may twist everything around, start a smear…

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When to Break Up

When to Break Up

It’s so hard to end a relationship, especially for women. We’re taught to be selfless and always consider everyone else first. We’re socialized to be codependent, to sacrifice our wants and needs to please others. So we’re not really codependent, we’re just conforming to the ways our culture expects us to. Society has taught us to defer to others and to be nurturing to others first. It…

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Cheery Convalescing

Recently I’ve done some inexpensive, simple decorating to cheer up my environment while I’m spending a lot of time at home. It really helps! ♡ https://michellemiyagi.com/2020/10/29/this-precious-life/ https://michellemiyagi.com/2020/06/13/adore-cherish-love/ Hi! I was an RN, BSN in mental/behavioral health for 27 years. Now I’m helping empower caring people like me to prioritize themselves by…

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Mutual Abuse?

There have been discussions recently about the concept of mutual abuse. In most domestic violence cases, mutual abuse is not true. There is an abuser who has more power than the person they are abusing. The person being abused may fight back, but that is not mutual abuse. Men typically have more power than women and in a majority of cases, it is men who are abusive though women can be abusers as…

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Should We Toughen Up?

Should We Toughen Up?

I disagree with the idea of whatever doesn’t kill you makes you stronger and that we need to toughen up. I believe that there is already enough adversity we all go through in life and we do not need to add more on top of it. Quite the opposite is what I support. Instead of hardening and closing ourselves off, we would benefit more from opening, softening, and expanding compassion, kindness,…

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Treat Yourself As A Beloved

Treat Yourself As A Beloved

Here I explore the advice I would give anyone. This applies to anyone at any age. It’s never too late to live more authentically. I continue to learn and grow. The older I get, the truer I am to myself. I wish I would’ve known this sooner, so I hope this helps someone do what’s right for them today.…

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My Intention for The Logical Heart Knows Best

My Intention for The Logical Heart Knows Best

My intention with The Logical Heart Knows Best is to empower women to know, trust, and love themselves while creating healthier, self-compassionate boundaries. I am raising awareness of how our societies condition us to sacrifice ourselves. It’s intrinsic and expected of us according to our gendered social roles. This results in overwork, burnout, and compassion fatigue, with mounting anger and…

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Self-Compassionate Boundaries

The most important lesson I’ve learned in life is the necessity of self-compassion. They teach us to consider others first and to conform to the rules of our societies or else be outcast, judged, or punished. Our culture socializes women to be quiet, submissive, caretakers who are subordinate, passive, and non-aggressive. From birth, they train us in our supposedly innate gender roles (research…

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