The Economic Impact of Lupus | Financial Impact of Chronic Illness

The economic impact of lupus can be burdensome and it is not discussed nearly enough. Lower socioeconomic status along with the inability to work plays a role in increasing mortality rate. How has lupus impacted your situation?

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My name is Samantha Wayne and I have been creating advocacy videos on YouTube since 2009. This channel was formerly known as Live Hope Lupus and was created in order to start a community for those living with chronic illnesses. In September 2019, I transitioned to a plant-based diet and I have found my body is responding well to it. Along with my lifestyle change, I am learning to alter my focus more on the positive. My current content will focus on my healing journey, what food I am eating, and everyday life. I will still be posting an occasional update about my health. I hope you all are ready to join me on this crazy journey of healing. We are all learning how to navigate this life together. If you have subscribed, thank you! I appreciate your support and look forward to talking with you all in the comments.

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DISCLAIMER: This content within this video is not medical advice. The purpose of these videos are for general education and to share my own experience. This content should not be used to self-diagnose or self-treat any health condition. Please consult a healthcare professional before attempting anything in this video.

#lupus

[DiannaCarney]

This is such an important topic- I absolutely loved this video! I think the more we talk about money & the economy within the chronic illness community the more we can help each other be prepared for whatever is coming in the next few years (rising prices/ recession wise)!

This also just hits so close to home for me too- so thank you on a personal level as well.

[Gratefulplants]

Thank you so much for this video. The financial impact of chronic illness just doesn’t get talked about enough. And if you’re disabled and can’t work, it’s worse. I have MS and my medicine is $20, 000/yr with insurance and $60, 000/yr without insurance. Keep up the good work! 💕

[marting]

Thank you for this important information. Please keep up the great work. 🙏 Blessings to your work, compassion for others and self compassion. You are a strong representation of a strong female, honest, hard working and increasing awareness. Helpful beyond what you can imagine. 🙏❤️

[epd]

For me as a European this is so out there. We are for sure not perfect but this would not happen here.

[isabelab]

Great video. You bring attention to one of the biggest issues with chronic diseases. Lack of information and access to proper care, especially in lower socioeconomic conditions, makes it difficult to get proper care and have resources to get the care. Carrying in full time jobs is not always feasible and disability system is so fraught with inequities and poor legal framework.
I don’t have SLE but Sjogrens with organ impact. Also cancer survivor. I am in a good space because my conditions are being managed but medical costs have been a burden.
It sounds like you have found your work sweet spot as well.
Thank you for your advocacy

[afafafaf]

Thank you for all what you do. GOD bless.

[kirakoli]

Hearing this makes me really mad.
I live in a country where the health costs are covered by health insurance and health insurance is split between employer and employee.
So hearing numbers in the thousands is just wild to me!

[lauralupusandsupport]

Those stats are scary and very sad!😪
We have a lot of work to do...this shouldn't be happening in the USA in the year 2022

[jkally]

This is so important to talk about, thank you

[marandagreene]

Sam how is the Goodbye lupus going for you lately? Also how do did you get off of prednisone with your doctor? I am about to start benlysta how did you tolerate that?

[LifewithKrystle]

So grateful to be in Canada. While our healthcare system isn’t perfect (example: I’ve been waiting since September to see an ENT and since August for my TMJ cortisone shots) we don’t have large medical bills after each dr visit. My husband has good drug coverage through his work that covers a good portion of my meds. It covers 80% and once we have spent $500 out of pocket the rest is 100% covered so at that point we just pay the $6 dispensing fee on each prescription. But ends up adding up medical wise for me if over the counter meds like ibuprofen, Tylenol, and all the supplements I take. They are super expensive at our drug store. But again, probably doesn’t end up anywhere near what the US pays. With that said, I can only manage part time work so that has really set us back financially in terms of housing and future goals which really sucks.

[stephaniehamlet]

Miss your videos they give me comfort hoping for more of your videos!!!😁

[jlastre]

I was diagnosed on October 7th. I believe I was undiagnosed for several years as I have the beginnings of kidney involvement. I had moved to my current location for a job. My first PCP totally ignored my complaints. I am also a 58 year old Hispanic male. I do believe there is a correlation in how the medical profession is prejudiced towards non whites. Statistics bear this out. Because I was so long undiagnosed my finances are in tatters. I’m trying to get onto disability. Every other living expense is stressing me out. Obviously I’m currently below the poverty level. I have a co-morbidity of type 2 diabetes. The study you sited is sobering. I sometimes wonder if so little would be known about lupus if it was predominate amongst white males. Anyway trying to address my health issues first then finances. But it’s not easy. Hopefully when I get to the therapeutic levels of hydroxychloroquine I’ll be able to do some work. While I am in a high paying in demand profession I have been out of work for several years now. Of course I’m filled with trepidation. Thank you for making this video.

[halakeylani]

Hey Samantha 👋
I love you and your videos very much
Can you please tell me if you have shared a video about your fisrt symptoms of lupus and what hurts you now ❤️
Wish your are fine and safe always❤️❤️
Wish you all the best ❤️❤️

[frumtheground]

Wish I was surprised, but I'm not. Tho I do wonder if the increased rates are because of advancement in diagnostic technology and medical professionals overall being better educated to spot it? Studies will show that rates of autism has also significantly increased but that's mostly contributed to the fact that the diagnostic criteria changed to encompas the newer more accurate research. Obviously SLE criteria hasn't changed, but the technology has and so has how doctors are trained in their field. Not perfect, but better than it was 20 yrs ago. On an anecdotal note, I've had much more positive experiences with younger doctors as far as bedside manner and willingness to explain to me what my symptoms are stemming from, how certain medications work, and just generally willing to listen instead of assume I just need anti depressants and I'm just too young to be sick...

[inday]

oh no. i got no work, no house, no family and what will then happen to me