After many delays and missed promises, the Lives Interrupted Project is here. The goal of the Lives Interrupted project to make crystal clear the costs that diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia, POTS, post-treatment Lyme Disease, and Long COVID wreak on the people who have them.
Even now, with media stories regularly communicating Long COVID’s serious effects, it is still too often met with derisive comments. People with chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) have, of course, been fighting that battle for decades.
Those mindsets directly impact the amount of support these diseases get – from individuals, corporations, and federal institutions. You can see that in the small amount of funding ME/CFS, FM, and POTS get in institutions like the National Institutes of Health (NIH).
While studies show that ME/CFS is significantly more functionally disabling than heart disease or multiple sclerosis, that people with FM have a lower quality of life than people with rheumatoid arthritis, osteoarthritis, or diabetes, or that people with long COVID experience more fatigue than people with stroke, inflammatory bowel disease (IBD), end-stage kidney disease, or cancer, they still can’t get across how the incredible costs these illnesses often impose on people on a personal level.
Making Real the Cost
Lives Interrupted does that by putting faces and stories to those experiencing these diseases. It does this by:
- contrasting the jobs and responsibilities people had prior to becoming ill and afterward;
- conservatively estimating the economic losses due to illness by contrasting what someone would be making now (adjusted for inflation) if they had remained healthy, with their actual income;
- exploring other losses – both economic and relational;
- giving people the opportunity to tell their stories.
Over time, we will be able to create statistics regarding economic losses, duration of illness, functionality, impact on families, the greatest losses, and others.
The Lives Interrupted program has the potential to alter how your friends, family, doctors, legislators, and the media perceive these diseases. If you want your friends and family to get a real-life sense of the costs of these diseases, send them over to Lives Interrupted. You could view contributing your story as an act of generosity to everyone with these diseases. The more stories that are contributed, the more impactful this program will be.
The Lives Interrupted program is the first part of the Big Map Project, which was conceived by Cort Johnson and built (and improved) by Stavya Grover. Thanks to Lenny Jason and Art Mirin for their suggestions, to Gloria Hirjak for her images, and to the beta testers who took the program through its paces.
Participating in Lives Interrupted
How badly was your life interrupted? Let us know by participating in Health Rising’s Lives Interrupted program.
Was your life interrupted by these diseases? If so, tell us how in the Lives Interrupted program.
The first step in participating in the Lives Interrupted project is becoming a member of the Health Rising Forum.
This is necessary because we integrated the Health Rising Forums private messaging app into this project to allow people to privately and securely communicate with each other. (You do not need to ever use the Forums and can disable the private messaging app if you wish.)
Except for your username, which will appear on your story, all other contact information is kept confidential. We will never provide your contact information to anyone without your permission.
Once you register, you’ll get an email asking you to confirm your registration. Once you’re in Lives Interrupted, the program will ask you a series of basic questions, such as the name you wish to use, your age, and your location (you can be as specific or as general as you wish – at the very least you must include a state or province), functionality, the date you became ill, etc.
We’ll ask about your job responsibilities and income at the time you became ill, how many years you’ve worked (part-time or full-time) since becoming ill, whether you’re retired or not, and what your current income is. (You can keep this information private if you wish.)
Then we’ll take your income at the time you became ill and calculate what it would be today – adjusted for inflation, contrast the two, and come up with total income losses due to illness. Because we won’t take into account your expected earnings as you might have progressed in your career, we’ll be left with a very conservative estimate of your economic losses due to illness.
We’ll also ask a series of questions to see how your illness affected your finances in other ways, as well as your family, your housing, and your relationships. Finally, we’ll give you the opportunity to briefly tell us about your greatest loss and then tell your story in detail via writing and/or video.
While the list of questions may seem daunting the program can be completed quite quickly depending on how long you take to tell your story. It took me about ten minutes. At all points, you can save your story and come back to it.
Future blogs will track the economic and personal costs and most significant losses for the various diseases and report on them.
To Participate in the Lives Interrupted Program…
Health Rising Forum Members
If you’re already a member of the Health Rising forums, login to your forum account using the login link on the upper blue menu on the right-hand side and then either click on the following link to add your story or use the link on the Lives Interrupted widget that’s now found on the right-hand side of all Health Rising’s page. (If you’re not sure if you are a Forum member the program will tell you that.)
People Not Already Enrolled in the Health Rising Forums
If you’re not a member of the forums, visit the forums using this link and register using the registration tab on the upper right-hand side of the page in the blue menu bar. Once your registration is approved, you’ll receive an email asking you to validate your registration. It will contain a link to your personal portal page and allow you to enter your story.
- If you’d like to see what people have shared thus far, click here.
- To learn more about how we did the calculations, go here.
Health Rising’s Summer Donation Drive Update
Some new things are coming Health Rising’s way 🙂
Thanks to the over 200 people who have contributed to Health Rising thus far! (We took down the donation tracker because I have been unable to keep up.) As we end up the last week of the drive, we have something new indeed.
The Lives Interrupted project opens really a new era for Health Rising. While blogs will always be my main focus, the new additions to the website – the Lives Interrupted and the Big Map project it’s embedded in, and the Treatment Review program that will follow, will provide new ways to communicate, collaborate and find helpful resources. If that sounds like good news to you, please contribute in a manner that is appropriate for you. Thanks!
Hi Cort, can I do this from the U.K. and does the finance bit have to be filled in? I didn’t get sick until after retirement age so the finance part doesn’t apply.
Absolutely you can do it from the UK. If you retired afterwards the program will note that and you can just fill out the rest – other questions about how you and your family might have been affected as well as most significant loss and your story. These are all things that we will be tracking 🙂
Thank you Cort. Will be glad to contribute.
I have been diagnosed with CFS and Fibromyalgia,by a Rheumatologist, after a brief exam, but the symptoms occurred at exactly the same time as the development of Hashimoto’s Disease, which is affecting my brain [autoimmune cerebritis] as well as destroying my thyroid.
Can these autoimmune diseases rule out cfs, then?
I was told that CFS and Fibro. are symptoms of my autoimmune disease, by some doctors,, others don’t see the connection, but I sure do.
Thank you
ME/CFS is ruled in after other things have been ruled out, so it isn’t a quick investigation. The hallmark sympyom is extremely debilitating fatigue often lasting weeks after very minimal exertion …often just hairwashing, or a short conversation.
Hashimoto’s is treatable with a replacement hormone…levothyroxine. I’ve had the latter 30 years and never looked back. The 2 diseases are quite distinct and the fatigue with Hashimoto’s goes away once treated.
It’ll be very powerful (and relatable) indeed to see all these personal stories in one place (thank you to those who participate). And participating is a way for us all to be counted.
I imagine the running total of the tremendous financial losses will be shocking.
How do i remove a comment, please?
I am an MSW. I wrote Federal grants for the State of NJ. I was a single parent. I was diagnosed with CFS in 2001. My career lasted 7 years when all my awards couldn’t stop the fact that I had to stop working completely.
I was overcome with fatigue and pain.
It hurts me more that I can no longer access millions of dollars to help people. I cannot be a social worker that works. It’s been 23 years now and I’ll be 65 in 2 weeks. I should just be retiring, with a pension to boot. I am poor. I am lonely. I am in pain. I feel my life is useless though I still seek treatment that’s non-existant. ME/CFS took away my income and my goal in life.
But I’m still fighting. Apparently I’m a survivor. I am hopeful for the future.
Great job! Good luck! I hope this has some effect.
Hi Cort, is it possible to either make the advanced degrees options more general or add Juris Doctor to the education options?
Thanks!
Jenn
Hi Cort, the link to Add My Story on Welcome page portal is not working. Please advise… thanks.
Once in the severe, now I don’t know where I sit on the scale.
How can anyone possibly know where we sit on the scale when I can’t even find a doctor in Canada that knows anything about me/cfs.
I stopped going to their errogance years ago.
To me, this is one of the biggest crimes against humanity, but, I was severe….so severe, such severe head pressure that my nose would bleed constantly.so severe that I wanted to go to the gun safe several times.i have no idea what spared me.i know now that my intestines were being forced upward like a severe case of GERD causing my nose to bleed constantly.
I don’t think I have classic me/cfs 🤷♂️. I cant afford to go to a larger center to get a proper diognosis. I cant go to another province like the British Columbia center for womans health because i dont live in B.C. and/or carry a B.C. health card.im stuck in my province and have been ignored
I think I have infection the last 40 years like parasites from animals or mosquitoes or something along those lines although I wonder also about childhood vaccine injury as my mother says I was always a little “different” in adolescents.
Mercury in vaccines REALLY!!
I’m sorry ,as much is I’m wanting to contribute, this reigning govt. Has once again refused to help anyone with disabilities.
On a phone in talk show a woman on disability asked TRU DOLT 🇨🇦if he was going to increase her $600 / month disability payment….she stated that “it doesnt even begin to cover my living expenses”….
TRU DOLT once again lied.They finally did increase it up by a measily $200 but only a small amount of people will qualify for the increase… it still falls in the joke range.
He cant even care for his own people but gives billions away to other countries. Shouldn’t the people be cared for firstly.
I’ll miss out on the new crumbs as I’ll be 65 soon.
He is such a hated person in this ONCE great country.
I just want my 70’s back…we listened to great music (which helped save my life)
drove great cars ,
and had great hair. It was a great time to be ALIVE and THRIVE.
This illness didn’t ruin one life, it ruined my entire family. My daughter could have gone to university had I been able to pull my weight.Its ruined our entire existence as a once very nice family unit in a very nice community.