Lynjbennett65
"Embrace. No, not that kind of embrace. Not a hug... well, not a physical hug. Embrace as in the old-fashioned word for "include" or "to have as part of a whole." I think "embrace" is a good word for 2026.
I heard the song "Embraceable You" sung by the great Nat "King" Cole on my favorite jazz playlist. It occurred to me how many meanings the word "embrace" holds. (and "hold" is another word for embrace lol) Think about how often we use words that are synonyms for the word "embrace." Yet it still seems like an old fashioned word doesn't it? For those of us who have conditions that fit under the umbrella of rare disease we are asked to both embrace and brace. Brace ourselves for difficult news, difficult opinions from those outside our umbrella, ect.. What if we "flip the script" as the saying goes what if we use the word embrace. Embrace the difficult news ahead, embrace the difficult opinions, judgements, or painful rejection. If we "brace" as in "to take heart" or "brace-up" (Merriam Webster Thesaurus) instead of just preparing ourselves for something else to go wrong. Yes I do know what I'm asking of myself and anyone reading this message. I'm asking you to give yourself the grace to accept the difficult things.
My experience with fellow rare disease fighters has taught me that we are far more likely to give grace to others than we give ourselves. We readily accept accusations, criticism, subtle digs, and shunning, but we're not ready to prioritize our own mental health. @DonnaFA has initiated a journey for me to understand why I tolerate so much negativity from my family, allowing myself to shrink and undervalue my contributions. I've endured endless comments like "eat clean," "heal your body," "get more exercise," and the most hurtful, "your family deserves better." That last one was the breaking point. Yes, I was very angry. But, of course, anger and high emotions are detrimental to my POTS and MCAS. I vented here on Rare Disease. I then had to consider what to do now that family members had made their opinions very clear. As difficult as it was, I had to let go of expectations. Not cut them out of my life, but release the expectation that my family would behave respectfully. Clearly, that wasn't the case. I could respect myself enough to recognize my family discussed my life behind my back, but I didn't have to engage with or embrace their opinions. They haven't walked in my shoes; why should I expect them to understand?
For the past 13 of my 60 years, I've navigated a complex world of symptoms, new comorbidities, and the resulting mental health challenges. I've embraced my rare diseases as an integral part of who I am. No one gets to dictate the development of my whole self or the circumstances surrounding it. Am I perfect? No, not even close, as my forum posts might attest – I can be a bit of a "walking, talking dumpster fire." However, learning to shift my perspective this year will make a world of difference. Distinguishing between my own issues and those of others will be key to regaining my emotional well-being. I am grateful to DonnaFA and others in this forum for helping me realize I have a right to my own peace.
Side Bar for those who like history: Embrace, it's an Anglo-French word, and according to WordReference, it means: Embrace came into English in the early 14th century through Anglo-French, which adopted the Old French verb *embracier* (*embrasser* in Modern French), which meant "hold in the arms, enclose, covet, or cope with." It is formed with the prefix *en*- or *em*-, meaning "in," and *brace* or *braz*, meaning "arms," which comes from the Latin *bracchium* (plural *brachia*), also meaning "arms." The noun form, meaning "hug," first appeared in the late 16th century."
, I glad to hear that <3 It's a new thing, so stay strong and keep practicing the letting go. It will become easier. - Warm (((hugs))), Donna (Team Member) Thank you very much. I'm looking forward to the practical out workings "embracing" what life tosses my way. I messaged with my sisters tonight and while frustrating I reminded myself it's a "them" problem not a "me" problem. I could already feel the weight start to lift. Lyn , (((hugs))). I'm glad I inspired you to give yourself more grace. I would like to add a small challenge to that - many things start to change when we are careful of how e talk to and about ourselves. You are not a walking-talking dumpster fire. You are a beautiful soul who is struggling with more than her share of challenges and less than her share of support. I can't wait to see where this journey takes you, Lynn. Keep us posted! - Warmly, Donna (Team Member) Thank you so much! I like to discover alternate meanings behind words. In looking for a word to describe what I'd like to accomplish in the coming year I discovered "embrace". It's all about incorporating lessons learned into my daily life without judging myself. Even dumpster fire days. LOL. Thanks for the kind words.
Lyn, I really like what you wrote here and am so glad you took the time to think this all out and then share it here.
I do get what you are saying about embracing all that life brings us, both the good and the bad and I think I understand the nuance you are bringing to this particular word choice. I'm taggingto make sure she sees your post and again, I thank you for sharing this. From one "walking, talking dumpster fire" to another, I know how hard we try and how much good we can bring to the world on the days, when, you know, we're not on fire. 😉
Best, Erin, Team Member.
"Once again I'm asked to stop talking about my symptoms. I got the... "eat more beans, exercise more, eat more flax seeds and yogurt ect." This from my sisters... "All you talk about is your bad days, you NEVER have any good days. I feel bad about that." Really what it means is yeah I feel sorry for you but stop wallowing in self-pity and pull yourself together. You should be getting better since you can't DIE from what you have you should be more able to function... WHAT? They haven't spoken to me on any regular basis for the last 34 years and NOW they are worried? I didn't apologize. I apologized if I gave the impression that I didn't have any good days. That's not the case at all but I'm not apologizing for something that came out of left field and no one else in the family has. That's never EVER going to happen. So once again 1. I'm not a problem to solve or a puzzle to be put back together. 2. I have the absolute right to be chronically ill. "
(((Hugs)))
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You do have the right to have a chronic illness. You have the right to be happy. You have the right to peace. don't let anyone steal that from you. - Warmly, Donna (Team Member)
"I have come to 2 conclusions: 1. I am not a problem to be solved. 2. I have the RIGHT to be chronically ill. I can't change having POTS or MCAS any more than I could change being 5' 8" inches tall. "
, beautifully aid <3 I am guilty of seeking validation outside myself as well. That is hard to overcome, but it can be done. It must be maintained. And yes, the ball is in their court - acceptance, kindnes and grace are essential to establishing and maintaining relationships. You deserve that. Never let them convince you it's asking too much. - Warmly, Donna (Team Member) Right after I posted my reply to you I read this quote. "Refuse to chase peace where it can't be found." WHAT? Is that a thing I do? YEP that's a thing I do! WOW. When did that happen? I think I've always try to be independent but when the POTs syndrome hit, slowly I began to turn to others to tell me that everything was going to be okay. Of course it is, mostly ok now. However, I still seek peace through validation from my family. That's not really helpful at present. My sisters just haven't accepted that a handful of chia seeds are capable of healing me. I've been past the hope that anything I put in me will heal me... the only healing I will get comes from inside me. Rethinking what success looks like for the average chronically ill person is part of the gig. If they truly want to help they'll have to accept that the best thing they can do is help to strengthen my resolve to be brave and to take care of myself. Kindness, grace and loyal friendship are powerful healing tools. (that's science) It doesn't have to be family who form that bridge between where you are now and where you want to be. Ultimately it is our choices that gets us from point A. to point B. , (((hugs))). Birth families can be exhausting, and you don't have to let them put you in the place you found yourself when they left. You have the right to peace. You can tell them that you are done judging yourself, and that you are done being judged for things beyond your control. It's completely okay to set boundaries, especially if your mom as the mediator, and that energy is missing. I hope today is a better day. - Warmly, Donna (Team Member)
Bad day yesterday. My sisters were all over me about my syndromes. I was exhausted by the time I went to bed. My poor dad. He sees his daughters fracturing in the face of the death of my mom and he doesn't know what to do. I don't know what to tell him. Was mom the glue that held us together or was our fear of the inevitable lecture from mom enough to keep us in line? I will never know. I loved my mom she'd be devastated if she knew how things have turned out over the last year., oh goodness, I hope you do - and I'll be here anytime you need a boost of resolve! All you "need" is the grace to be - who you are, how you are as you are, how you feel in any specific moment. - Warmly, Denna (Team Member) Oh! That's so great to read. Thank you for telling me! Did you read 's article about advocating for yourself? Such a brilliant article. I printed it out! I've got to be more assertive I think. Just because I don't want anyone to be upset with me I become the shrinking violet. (Which is REALLY not me) I mean many times people are already uncomfortable or upset by my presence. I've got to have a special diet, a place to be able to sit down (in case I faint) I wear compression clothes and the list goes on. There's no point in trying to become invisible. I need to be upfront with people. Actively listen to their point of view but then set my boundaries... say what I need with minimal explanation and no apologies. My sister literally wrote to me in a text "You need to change doctors, you need to get better, what you have isn't terminal. You should be getting better and have a better quality of life". Really? Have you met me? This is why I am resolved to stop apologizing. , I agree, a very good place - and I have adopted your commitment to myself in my quest for peace. The world is not built to provide that for us when we stumble, so we do need places like this. Thank you for the inspiration (((Hugs))) - Warmly, Donna (Team Member) Thank you Donna. I've also decided not to judge my memories but to let them pass without comment. Memories aren't always accurate and I can't change what happened (at age 60 why would I?) I'm telling my friends here at rare disease about these revelations because I want to be sure I don't slip back into the old, and frankly easier, pattern of feeling guilty. We cheer each other on here. This is a good place 😀. , that is monumental! I'm glad that you have gotten to the place where you can stop blaming yourself (and not accept being blamed)for being sick. = Warmly, Donna (Team Member)
"I've signed up to take a course in Journal Therapy through Udemy. Apparently when I finish there's a certificate. I figured I just needed a little bit more information on what journaling does. So wish me luck y'all. My 60 year old brain wants to tackle this course. "
Thanks Donna! I'll do just that. , I love Udemy! I hope you enjoy the course! Let us know if you learn anything surprising! Good luck!