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Breathing Through The Cracks's avatar

If I could like this 1,000 times, I would. Thank you for this. I could literally go on forever about this topic. FOREVER! 30 years of being chronically ill will give you a lot of people trying to heal you out of their own discomfort. Two of my favorites? The first, being told to take a hot bath by a pain management provider while in a severe pain crisis. I have a rare, incurable skin disorder (autoimmune) that prevents me taking from baths and using hot water. They know this! The second, hearing "at least it's not cancer". I do have cancer.

Be kind humans. That's all we ask. Thank you again. Be safe. Gentle hugs 🫂🌈✨️💚

Elizabeth Wilkins-McKee, LCSW's avatar

Wait, someone tried this with me too -- "The second, hearing "at least it's not cancer". I do have cancer." I do not have cancer but I looked at this person with the worst, what my daughter calls the "mom fix your face" face. Then I walked away.

Also, what does that mean for our fellow people with cancer? So you don't know what to say to them either?

I can't imagine how this would all be if I did. I am so sorry to hear this. Hugs, love and light to you.

Bacchus's avatar

Ok, I have cancer and all I want to here is "how are you doing?" I say "im still bipedal, grab a beer".

Breathing Through The Cracks's avatar

Exactly ... sometimes people overthink kindness and compassion and then say something that is the absolute worst!!! I'm disabled and sober but we can still grab a drink (club soda for me!😉) And, I'm sending you so many positive thoughts, gentle hugs and ease throughout your journey! 🌈✨️💚

Bacchus's avatar

Club soda it is☝️

Claire Sarah Cooper's avatar

My MIL used to talk to me A LOT about people who were ‘actually’ ill. The undertones of you’re not unwell at all were screaming louder than her words. That was when I only had an ME/CFS diagnosis and degenerative disc disease. I have accumulated several others since, but these days we’re not allowed to speak about health with her (my kids have chronic illness too). But she is allowed to speak about her and her daughter’s health to us.

Moss and Matchsticks's avatar

That sounds incredibly painful. I’ve experienced difficult responses from people around my being ill. It isn’t easy and I hear you.

Claire Sarah Cooper's avatar

Thank you, I appreciate you sauce that 💜✨💜

Claire Sarah Cooper's avatar

haha!! 😆 I just noticed the typo when I saw the notification you had liked the comment. It is late!

The Resilient Zebra's avatar

I would like this a thousand times, too!! Do you have EB?

Joanne Doyle's avatar

I am cringing at the cancer comment. I’m so sorry. But I’d also take pleasure in seeing their face when you said it. I’ve had the suggestion of hot packs during a trigeminal neuralgia flare. They have no idea.

Breathing Through The Cracks's avatar

Yes ... the look on their face is always priceless! Gentle hugs to you.🫂💚

David B Younger's avatar

I love this. Even though I have a genetically inherited condition caused by a little gene staying switched on after birth instead of shutting off causing a cascade of shit, I’ve been told that if I did certain exercises or stopped eating dairy or drank goat meat tea that I could cure my condition. I tried it all when I was younger. That said, I have not tried the bucket and grapefruit in the woods, so maybe, just maybe…

Sam DeCosmo's avatar

David, when are we meeting in the woods to cure our genetic conditions? I’ll buy the grapefruit, you bring the buckets!

David B Younger's avatar

Let’s do it! I hear pink grapefruits work best, but only if they’re under ripe, and just to be safe, we should probably aim for a new moon.

Mary Cebalt's avatar

Can I join you? I’ll charge the grapefruits under the moon first, for good measure

David B Younger's avatar

It’s a party!

Sam DeCosmo's avatar

Absolutely! The grapefruits must be charged for it to work!

Sam DeCosmo's avatar

🤣🤣🤣

Moss and Matchsticks's avatar

This whole thread here has made me ridiculously happy. I'll bring the blankies in case its chilly out there and we need to be cosy after having all the fruit lobbed at us. 😁

Breathing Through The Cracks's avatar

According to all the bleeping meds I take I can't eat grapefruit. So I guess I do a med holiday first? Then I'll get all the grapefruits we need. Just let me know how many yoga mats I should bring. 😳

Gentle hugs! 🫂

David B Younger's avatar

Do not fear. We’ll bring oranges as well!

Joanne Doyle's avatar

Sign me up for the Grapefruit Project 😉

The Resilient Zebra's avatar

You have to do yoga while you eat that grapefruit, under a harvest moon only. 😆

Moss and Matchsticks's avatar

😆 That must be where Ive been going wrong. 😆

Louise S Williamson's avatar

And you need to distill the juice and dilute it in multiples of 10. And keep it away from coffee.

Elizabeth Wilkins-McKee, LCSW's avatar

So much wisdom and heart in this.

My favorite line was: "EVERY SINGLE HUMAN BEING BEFORE THE INDUSTRIAL REVOLUTION!

AND MOST OF THEM DIED A HORRIBLE DEATH BEFORE THEY’D REACHED MENOPAUSE/THE POINT OF EXPERIENCING ERECTILE DYSFUNCTION DUE TO AN ENORMOUS STRANGLING PROSTATE."

The romanticization of pre-industrial life continues to baffle me. People, there was no free time. No “slow mornings.” Life was labor. Constant labor. Keeping people alive was the full-time occupation.

And there was very little rest. Then again, I suppose some of the appeal for certain people is that there also weren’t vaccines.

At this point, perhaps we should just send them back in time and let them test the theory.

Moss and Matchsticks's avatar

I have no time for anyone who romanticises “natural living” while living in an age where they benefit from herd immunity even as they refuse vaccines.

Sam DeCosmo's avatar

This is brilliant. Absolutely brilliant. And it just makes me wish even more we could sit down together in your garden and chat. Because I could talk about this for hours. I’ve got stories. I know you do too. The one that comes to mind first though has to do with my college roommate who was also my maid of honor in my wedding. Sadly, we’re no longer friends. She became a naturopath and was so convinced what she learned could heal me. I appreciated her heart. But she became very frustrated when her diet change recommendations and nervous system protocols did not fix my faulty connective tissue from the genetic disorder I have causing the majority of my symptoms. And I became even more full of shame. We drifted. I grieved the loss of that friendship for a long time. Now I’m content with the idea that some friendships aren’t meant to be lifelong and serve us better in certain seasons.

All that to say: thank you for this writing. What you’ve shared here is so important. Now I’m going to go find my favorite quote to share ❤️

Moss and Matchsticks's avatar

Thank you Sam. Id love one day to sit and chat in the sun, over a cuppa. I think we’d have a lot to share. It would be lovely. I’m sorry to hear about your friend. That sounds really sad and hurtful. I lost a friend recently who interpreted my accessibility needs as control. It can be very painful when our friends project inaccuracies onto us. x

Joanne Doyle's avatar

Naturopaths are the worst. Convinced they can cure anything with herbs. I end friendships over repeated issues with unsolicited advice.

Mary Cebalt's avatar

I’ve had a very similar experience with a friend who was so convinced she had the answers to my genetic condition. It’s really hard. I feel like sometimes the perspective unfortunately isn’t there when you haven’t experienced it yourself. I’m sorry you also lost a close friend this way, it’s hard!

Sam DeCosmo's avatar

Exactly, Mary. I know her heart was in the right place. But she just didn’t have the lived experience. It was so hard because she was frustrated when I didn’t get better after adding things like collagen and I just felt like I was failing and not trying hard enough. It sucks. I’m really sorry you experienced something similar.

Ada Cadence's avatar

Thank you for this! I feel like there isn’t a category of human experience left which hasn’t been invaded by meritocracy.

"Sometimes there is just a frightened person trying to manage the changes and new reality, rather than being able to travel towards a cure. Sometimes there is just learning to adapt.”

And frightened people are vulnerable. Suggesting de-contextualized wellness activities isn’t always just misattuned and a feeble attempt to steer you back into positivity because they’re uncomfortable with your painful reality, but it reproduces a power dynamic in which the vulnerable are preyed upon by the wellness industry. The world would be a better place if we could all just sit with how bad it can be.

Moss and Matchsticks's avatar

Yes, the compassion of just sitting with someone and being able to do so without trying to fix or deflect is very hard to do. I agree that it’s wha’s needed in very many cases.

Joanne Doyle's avatar

They love to talk about how the pharma industry is preying on people but fail to mention this is a multi-billion pound industry in its own right, only without the regulatory oversight.

Moss and Matchsticks's avatar

Yes! Thank you for that important reminder.

Allison Ray Benavides, LCSW's avatar

When I worked in Hospice Care, the people who did all the things and still died were the most upset. We all vaguely understand that we’re going to die in some big far off way, but seem to forget that something is going to kill us. Just being old typically isn’t it. Cancer, heart disease, COPD, congestive heart failure, late stage kidney disease, dementia . . . speaking of dementia. as a hospice worker, seeing how much medication it can often require to well palliate someone at end of life with dementia, I shutter all the time at the thought of how someone passed that way prior to modern medicine. I can promise you, you don’t wanna go out that way. Great post. 🖤

Moss and Matchsticks's avatar

Thank you for sharing your experiences here, that means a lot.

Mary Cebalt's avatar

Yes yes yes. It’s a victim-blamey mindset, but one that serves the wellness touting individual; because if a person is still ill, there must be something they are missing/haven’t tried that the wellness individual DOES know about. That’s something I find super exhausting- the unlicensed YouTube wellness gurus acting like they know more about a complex illness than the person living with it for decades.

One nuance no one seems to mention (besides social determinants of health) is this: being ill itself can preclude someone from the the very obvious healthy lifestyle choices they say are going to change your life — healthy food, exercise, nature, socialization, etc.

severely sick people can often not do all of these, or not optimally anyway. So the assumption, then, is that they are not practicing healthy habits and therefore they are unhealthy — not that the privilege of good health itself can *make* these very habits more accessible.

Joanne Doyle's avatar

The feeling that you;re not trying hard enough drives you to burnout in the search for ‘solutions’. What’s helped me is giving up on it and enjoying the life I actually have. And writing.

Moss and Matchsticks's avatar

Same, Joanne. ☺️

Hopeful's avatar

Excellent post!

I was diagnosed with Stage 3 breast cancer at age 60. After going through all of the pre-screening tests, scans, etc. to determine if I was strong enough for intensive chemo, my oncologist said something that has stayed with me. She told me she thought I would do well during chemo because, aside from the cancer, I was "very healthy".

Five months of chemo, 3 surgeries and 30 radiation treatments later, I am in remission with a good prognosis. I have passed the 5 year milestone and am feeling hopeful. And I am almost certain that without medical intervention, I would not be here today. -- no matter how much sunshine and fresh air I got.

Science matters.

Moss and Matchsticks's avatar

Yes, science really does matter. Its lovely to hear that youve passed the 5 year milestone and are in remission. My family members wouldnt be here without medical interventions and scientifically proven treatments and neither would I.

Hopeful's avatar

Thank you. I'm sorry you are facing chronic illness and hope that one day soon science will find a cure. You seem like a lovely person. I read your post about the injured butterfly you found in your yard, and it brought me to tears. I truly believe that precious butterfly felt your kindness in its final moments.

Sending hugs from America.🩷

Bacchus's avatar

Ive been there, all the testing to see if can get through, cardio, pulmonary, urine, scans, biopsies. Glad to here your doing it. I finally hit remission. And like you say, my oncologist says im in great shape, but tired.

Hopeful's avatar

Congratulations!! That's wonderful.

The fatigue is real. It's a side effect of my daily medication. And honestly, even 5 years from diagnosis,I still feel like I haven't gotten all my strength back.

Wishing you the very best.

Susan de Vriend's avatar

Yes and thank you! "juicing broccoli with the essential oils of a mermaid’s toenails can cure cancer, apparently the world now believes her." I learned this a lot about my autoimmune disease that no matter what amount of Kale leaves I ate, it was not going to be cured. It wasn't lack of effort or too much pharma medicine. Nor was it my belief that I couldn't get better. It is a disease adapted over time, inherited through genes... whatever the causation, it is here and I have to navigate it for what it is now. I love what you say, it is not a fixed state. Exactly. And also it's not always so simple to say it was too much gluten and carb eating. Or that we can fix that with this. Because it's incurable (in my case anyways) and it is different in every single body. The beauty of the body is that it's so complex. It can also be frustrating. I learned the lesson that herbs and oils can help with some things and vaccines and meds with others. It's a hybrid. Some people did win the genetic lottery. It is a health privilege to not see that its not this simple. I find it frustrating when these people feel like it is a new religion to press people to believe in. "You need to start your day with cayenne pepper, water and lemons. Not coffee and milk. Good god no!" I believe health and wellness is a delicate mixture of many things to support anyone who has an illness. Which is why it's an Alchemy. Learning to be with all of the opposing things, finding ways to feel good in your body... That is what is about. Excellent article. Thank you for it. 🙏

Moss and Matchsticks's avatar

Thank you for taking the time to share your thoughts and experiences with me here, Susan. I’m glad to hear my article resonated so much with you.

Ken Chapman's avatar

I experienced the joy of a myocardial infarction about 13 years ago. 11pm i call emergency, tell 'em what's going on, and they say they are dispatching an ambulance right now. 20 minutes later an ambulance rolls up my driveway. )I lived approx 20 mins from the ambulance station)

By 1am, I'm in the largest public hospital in the state, in a theatre with about 6 technicians who all got out of bed to deal with this bewildered man. And a surgeon who bore a striking resmblence to the actor Julian Sands. After two stents were inserted, I was pronounced good as. For a while anyway.

Some days later my daughter was visiting, and asked me about the alternative remedies I was considering long term. I told her that when the shit hit the fan, those regular trained technicians, nurses, and surgeons are who kept me alive. Which I was pretty happy about. I might take a particular supplement to address a particular issue, but otherwise, I'm fine. On medication for the duration, but its regularly revisited, and adapted if necessary.

So far, so good.

Elizabeth Wilkins-McKee, LCSW's avatar

Oh, but Ken, you and I both know sunshine, gluten-free living and lavender would have spared you all of this. Right? (This is sarcasm in case it isn't clear.)

Moss and Matchsticks's avatar

I’m glad you got the excellent and skilled medical care you needed, Ken. Thank you for sharing your experiences. I’m glad your here at Moss and Matchsticks and appreciate you taking the time to comment.

Stephen Bondar's avatar

Sunshine, especially when listening to music, feels like it has some kind of healing properties of its own. That’s just because it makes you feel good.

I know in my own case, but it’s a legitimately prescribed pharmaceuticals actually keep me from jumping off a cliff or killing somebody else.

Moss and Matchsticks's avatar

I hear you. Sunshine has its own benefits but legitimately prescribed pharmaceuticals have saved my life.

Stephen Bondar's avatar

Mine too. And that is no exaggeration.

Moss and Matchsticks's avatar

Same. Thanks for taking the time to comment. Im glad youre here.

Elaine Walker's avatar

I wonder if uncertainty is such a huge risk that most people prefer blame. Blame anything from The System to Parenting. Lack of Medicine to Over Prescribing.

Sometime Acceptance is too cheap.

Moss and Matchsticks's avatar

Blame distances people from what theyre afraid of, I think. Projection costs less emotionally.

Elaine Walker's avatar

Yes!

Jay's avatar

It needed saying just like this and it still needs saying more so yep, I'll restack it and hope whoever gets it restacks it again and so on and so on. I find only one common thread in all this stuff online. It's never the same for the next guy, close sometimes ok but never the same. I was part of a clinical trial for cancer treatment back in 01 (hint, I'm still here so what do you think happened?) when they told me they needed to cut out my tongue, my neck would be concave, there'd be skin grafts, I'd be tube fed for the rest of my life and oh yea your prognosis is only to live another 2 years, I I was in the wrong place and a little voice in my head started speaking up. I pushed and they wavered. I listened to what my inner voice said. IT was right since I'm still here although that could seriously be an oxymoron. I agree with your point actually I do. I came to know that we are all on our own path and what works for one doesn't work for all. There is only one voice in your head, ok maybe more, but listen there, not in fear, not is despair but find a quiet space within your self to listen.

Moss and Matchsticks's avatar

Thank you, Jay. This is exactly why I have such a problem with certainty around illness. One person's story is never everybody else's.

Melissa Scala's avatar

I can feel this article was written from your heart. I used to be the girl who thought I had to buy alllll the wellness stuff from the lululemon wellness influencers. Wow, I learned I was wrong. I eat really well, I exercise every day, walk alllll the time, prioritize sleep, have a positive outlook, am at a good weight, etc., etc., etc... pretty healthy, right? Well, I have high blood pressure and high cholesterol. And people around me are stunned. There is heart disease on the female side of my family - my mom had a heart attack at 62 and almost died, my grandma had one at 62 and died, and my great grandma had a heart attack in her 60s and died. Additionally, I am in perimenopause and cholesterol changes can happen no matter how well you eat and how much you exercise.

When I was prescribed high blood pressure medicine, I was unhappy, but with the family history, I was OK with it. But the statin... for a bit, I felt like I had failed. I didn't. I am taking care of myself well. Some things are out of my control.

Moss and Matchsticks's avatar

Melissa, this is exactly why I wrote the essay. The fact you felt like taking a statin meant you'd somehow failed says so much about the pressure we're under. You hadn't failed. You were looking after yourself. ❤️

Melissa Scala's avatar

Thank you for saying that! Cheers!

Sabina Yesmin's avatar

The truth. Your sense of humor. The soft details. Loved every bit of it.💜

Moss and Matchsticks's avatar

Thank you. Thats lovely to know. I appreciate you taking the time to tell me. ☺️

Carolyn Sullins, PhD's avatar

Thank you! Sadly, the dubious parts of the wellness industry prey on those of us who have been dismissed, gaslit, or just disappointed by conventional medicine. Often the results are just as disappointing and/or patient-blaming, just with a different flavor.

Moss and Matchsticks's avatar

Yes, absolutely.