Dealing with Chronic Invisible Illness Injustices: New MECFS/POTS/MCS/Fibromyalgia Podcast

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How to cope with the injustices of chronic Invisible Illness?
That's the topic for the first episode of the new Fibromyalgia Podcast : "Wisdom from the Other Side" (ME/CFS Podcast, POTS Podcast & MCS Podcast)
Claudia Goodell joins Dan Neuffer on this episode and we discuss issues around stigma, injustice and judgement that affect people experiencing chronic invisible illness. We also discuss some strategies on how to cope as well as practical ways of handling more difficult people.
What prompted Dan Neuffer to start this new podcast for people experiencing ME/CFS, Fibromyalgia, POTS and MCS? What are some of the worst injustices we experience with invisible illness, and what can you do about it?
That’s just some of what we cover in the first Wisdom from the Other Side Podcast.
For show notes, resources, subscription and other links visit here: cfsunravelled....
UNDERSTAND MORE with my book CFS Unravelled: Get Well By Treating The Cause Not Just The Symptoms Of CFS, Fibromyalgia, POTS And Related Syndromes visit my website here: cfsunravelled....
or on Amazon directly here: www.amazon.com...
LET'S CONNECT (follow Dan):
💌 Sign up to my newsletter via my website - cfsunravelled....
💙 Follow me on Facebook - / cfsunravelled
📸 Instagram - / danneuffer.cfsunravelled
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🐥 Twitter - / cfsunravelled
#Fibromyalgiapodcast #MECFSpodcast #MCSpodcast #POTSpodcast #recovery #invisibleillness
**MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content is opinions and information presented for EDUCATIONAL PURPOSES ONLY, and MUST NOT be used as an alternative to a healthcare professional’s diagnosis and treatment. Only a physician or other licensed health-care professional are able to determine the requirement for medical assistance. Please seek the advice of your physician or other licensed healthcare providers if you have any questions regarding a medical condition.

Опубликовано:

3 окт 2024

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Комментарии : 59

@penelopelambson6794 Год назад

I think the reason we “ ruminate” about injustice is because we desperately need someone to genuinely understand, and because being judged by those who should understand is a betrayal. Coping with betrayal alone is very difficult.

@hemovesme Год назад

I’ve come to realize as a lifetime fibromyalgia sufferer…. That the whole world suffers. Many with illness, many disabilities. Many sorrows of loved ones lost that have no answers. Homeless, addicted and abused in every way. We all are suffering in this existence. I chose a life of love in Jesus. To find joy, meaning and love in this journey with Christ.

@penelopelambson6794 Год назад

Being constantly misunderstood is a crushing burden. After 40 years of ME/CFS people in my life still have no idea what my experience with this illness is like, how it affects me and how I live on every level. I have friends who have different, well understood diseases that have National support groups. I can’t help but envy them for this. There is so much irony about this disease.

@karenmccants1439 3 года назад

I'm on video #12 in the re-wire program and I'm finally (after 20 years), feeling hopeful--like my life actually has a real future...thank you from the bottom of my heart. 🙏🏽

@CFSUnravelled1 3 года назад

Thanks for the positive feedback Karen.

@karenmccants1439 3 года назад

@@CFSUnravelled1 Dan, I don't recall you mentioning anything (so far), about neurogenic hypertension in CFS/fibro patients--is this common? I think I may have it--my blood pressure is so erratic...I don't want to go on medication because of the dependency aspect and side effects, and I'm hoping once I get "re-wired" etc., those symptoms will most likely go away? Thanks 🙏🏼

@janemary2365 3 года назад

Just yesterday I said to my tai chi teacher ( short seated online zoom class, one one one) I don’t know why but I often feel like I have to justify myself, we discussed. it’s fear of others judging me. Living all my 52 years with hidden illnesses I guess it’s not surprising. Thanks for sharing your thoughts, it’s time to let go of this need to justify. I think the main complication for me is relying on benefits, I’m constantly justifying what I fear professionals may view as contradictions, I walk my dogs.... yes I say once I’ve done that I’m fit for nothing else, not cooking or cleaning never mind work. Sometimes I can’t walk them, I now have a volunteer and a friend who help when they can. Support is essential. Living alone with CFS/ Fibro. and recovered would be a great podcast subject and being a single parent with CFS / Fibro and recovered. I look forward to future podcasts. As always thank you 😊

@CFSUnravelled1 3 года назад

Thanks for comment Jane.

@peaceforall2761 3 года назад

Thank you for making this video. I appreciate your wisdom.

@sarahmason3622 3 года назад

Thanks Dan and Claudia. I’m in the program getting close to recovery. So great to get access to additional resources to keep on track 👍❤️

@hemovesme Год назад

Thanks for a wonderful honest talk. I’m so encouraged

@SandraArduini 3 года назад

I hope you consider doing a podcast on Long Covid and how similar it seems to ME/CFS. I got sick last May 2020, and I am still suffering with on going symptoms, like so many others around the world.

@SatumainenOlento 3 года назад

Hmmm...I wonder if long covid is actually Fibro/CFS activation??? It would make these illnesses epidemic at this point. I know that these illnesses can be activated by virus going through the system too. But this is just an idea which came to me from your comment.

@heatherinnorfolk 3 года назад

Thank you, great conversation. I could also add that the fear of not being understood or believed is so dangerous to our recovery. I didn't seek help for years thinking I wouldn't be taken seriously (I knew of others who had struggled). But more and more people are learning and help is getting easier to access. Hopefully this will continue.

@avalonmist254 3 года назад

Great podcast! I used to have hopes of a spouse but now after 16 years I wouldn't be able to be there for the other person. It's very lonely and sad...

@CFSUnravelled1 3 года назад

It's a challenging journey. Glad you enjoyed the podcast, more coming soon. ;)

@kimwarburton8490 3 года назад

i tried a boyfriend, loved him to bits, but he couldnt cope n it set me back big time when we broke up. ive banned myself from romantic intimacy until i recover 100%+ n v luckily i have an old FWB i contact a few times a year for a 'booty call' when im thus inclined. this may not be your answer, but i know of several couples who dont live together but have been together part-time consistently, lovingly for many years cos they got too used to their independence. there are many more styles of relationship out there than i ever thought possible. Ive had several loving intimate long distance relationships back when i was playing MMORPG games too. sometimes, its more the mental emotional stuff we miss n need goodluck n hope u find ur happiness

@jordanwelsh4181 3 года назад

Great video filled with hope & understanding. 👍

@uneunanuevaesperanza7689 3 года назад

You both look so well!! Thanks a lot.

@marijanam3342 3 года назад

Great podcast! Thank you Dan! Can you talk about parenting when you have this illness?

@CFSUnravelled1 3 года назад

OK, great idea. That sure is a challenge whilst we are ill.

@reiniweigel3070 2 года назад

Yes I would like that subject, too....being a, single mum especially.

@kathystoner5239 3 года назад

Great Podcast! Thanks!

@kimwarburton8490 3 года назад

This was very timely, thankyou Dan :D I would like to know about difficulties in returning to the real world n how to overcome them. My previous experiences are no longer useful to my future life, esp career-wise & i keep having nightmares XD i wish to start a new career (not that i really had one) but i have no idea what talents i have or what work is suitable as i have a safeguarding thing against me for forgetting a client when the MECFS first came upon me if i was to be CRB checked

@Sarahpreecenelsonnz 2 года назад

Thank you so much Dan and Claudia for your insights and Understanding on this topic. So very supportive and helpful. Sarah P, NZ

@karenfountain1352 3 года назад

Great podcast 👏

@debbiedausch7259 2 года назад

It’s a was a pain to come up with words. The more stress . The worse it got.

@veronicakennedy4212 2 года назад

Hi my name is Veronica I have had fibromyalgia for many years ,after 2 surgery on a trapped nerve I was left in so much pain ,I could not walk and now I live on a lot of pain relief ,since the pandemic, I cant see a dr ,I have to manage my own pain ,if I keep ringing them I am told there is nothing they can do ,it's hard getting through the days,and I feel doctors don't believe me ,only for my family I would rather be dead than live like this forever

@rickelleantomez-williams5485 9 месяцев назад

I fully understand !!!!!!!!!my children are keeping me alive ❤️

@marielknowler8701 3 года назад

I came across your videos totally by accident but i listened to everything and will listen to the rest of the videos i need something to help Everyone in my family thinks i am making thing up for attention My husband thinks i want sympathy from him so i make things up I really do have ALOT of what you described wrong with me and then some But anyways now i know im not insane i really do have a illness time to show my drs n family your videos

@trishcovich1923 3 года назад

I have been told very aggressively by family and friends. "You aren't sick. Look! you were just at the Christmas breakup and you were fine there" What response do you give?

@CFSUnravelled1 3 года назад

My mind is flooded with smart-alec comments, most of which are probably not appropriate! ☺ If someone says you aren't sick, and you say you are - what does that mean? It means you are either delusional or lying. On that basis, the real question here is whether it is worthy of a response! (sensible or smart-alec)

@trishcovich1923 3 года назад

@@CFSUnravelled1 Not worthy of a response at all. Let go and move forward. It's a little similar to racism. They look at you as less than.

@kimwarburton8490 3 года назад

@@trishcovich1923 my nan was like this until i let her see how bad i can get. All the explanations by my mum n i n she'd forget XD so id sleep in the car on the way there n back and id be sociable for maybe 30mins n she would actually see me deteriorate, then id go n lie down on her dining room floor to recover enough for the journey home, while they all chatted in the lounge with both doors shut. i had to 'ban' my mum n step-dad from talking to each other and to me both ways in the car n it got through to nan from seeing me unable to compose a sentance almost fainting from the effort, witnessing the pain it brought me. for my aunt, it was teaching her the spoon theory n that tiny factors can make a huge difference to my day-to-day abilities, that i can now save up spoons in advance so i can appear to function well enough for special occasions, but it still costs me afterwards. she may not believe fully, but she accepts n doesnt rock the boat anymore. Others like my dad, i no longer have contact with, too toxic to be bullied with 'yuppie flu' comments. i dont know if this is permanent or not, i'll decide when im 100%+ Luckily, my mum 'defends' me n my needs n i am truly lucky to have her n my step-dad in my corner.

@trishcovich1923 3 года назад

@@kimwarburton8490 Well done you! Drawing boundary lines are so incredibly important. Getting better at this. Not an easy illness to explain. I try to keep it short.

@maritakelly1984 3 года назад

I totally disagree with you comments about medical professionals. I would rather have a doctor/therapist tell me “there is nothing more I can do for you”. They are being honest and now I know not to continue wasting my time with them. There are many diseases that the medical profession cannot help. They maybe can diagnose but there is no known treatment for the disease.

@randomname4726 Год назад

What is the difference between recovery and cure?

@CFSUnravelled1 Год назад

Check out this video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-ECY7n24DCus.html

@blovethompson 3 года назад

I don't get it. I hear talk about cures but there is nothing in this video about cures unless I missed it. Can someone please tell me what the cure is? Very discouraging.

@CFSUnravelled1 3 года назад

There is no simple one fits all magic 'cure', but people recover from the illness in a range of ways. - check out this article to understand this in more detail: cfsunravelled.com/the-ugly-truth-about-looking-for-a-cure-for-fibromyalgia-and-a-cure-for-mecfs-that-few-dare-to-admit/

@CFSUnravelled1 3 года назад

By the way, that's the first question on the next podcast! ;)

@olgap3765 3 года назад

Hello Dan! Can you estimate how many women and men, in percent, are ill with CFS. Based on your experience And from those you have talked to or met. Approximate numbers. thanks

@CFSUnravelled1 3 года назад

There are all kinds of numbers floating around, but given the lack of diagnosis and the separation between CFS, Fibromyalgia, POTS and MCS, I think it's impossible to estimate realistic numbers.

@TheDeafNomad. 3 года назад

Awesome! Will you turn on the captions? Thanks!

@CFSUnravelled1 3 года назад

We haven't got a transcript, but I will see if we can turn on the autogenerated captions. ;)

@CFSUnravelled1 3 года назад

It looks like it's working now. ;)

@TheDeafNomad. 3 года назад

@@CFSUnravelled1 Thanks!

@FreshAgenda 3 года назад

Yoooooo! I remember seeing your video... you mentioned you recovered when I asked how you were doing! Would love to see a recovery video from you!

@claudiagoodelltv 3 года назад

@@FreshAgenda Do you mean Dan or me?

@spasatasevski2597 Год назад

I’m to that point that I said this is it I have to live with this pain all over my body it’s not any help from Dr. us and I’m lame and thinking where to go but I’ve been everywhere and it’s no help and I have to live with this pain but it’s getting too much of pain I can hardly move. It’s a sad or we have to go and live with this pain that I have an alarm all these medicines they can go to the moon but they can’t find a cure.

@CFSUnravelled1 Год назад

Well, modern medicine is not in the business of cures, it's in the business of treatments. Not many illnesses have cures - it's a bit of a myth that such things exist. Having said that, there are many different ways that people recover which you can see from the recovery interviews on the channel - have you watched them? (check the channel home page)

@jefferadus8582 3 года назад

Where can you buy the program

@CFSUnravelled1 3 года назад

Hi Jeff. It's not something to rush into. You can enrol on the ansrewire.com website. but first watch the 4 free intro lessons to see if the program is right for you: ansrewire.com/info%20request/

@dancyspyder7949 2 года назад

I suffer with fibromyalgia and the last thing I need is you rambling on for 20 mins without sharing as much as a bean about how we can recover, I don’t have the mental strength to listen to you drone on and on ffs 🤦🏻‍♂️