Please help me figure out how to fund my life

May 3, 2018 11:03 AM

As I’ve noted before, I suffer with Chronic Fatigue Syndrome. I can’t do most of the things I used to do. Like hold a job. I hate being here with this problem, but I do need your help.

The CFS means I sleep a lot, although I never know when that’s going to happen. I have no circadian rhythm. When I’m awake, it’s extremely difficult for me to focus on anything (fatigue and brain fog). That makes editing pretty tough, and it keeps me from writing fiction, which is my love from childhood. I can still write haiku. I can’t stand for long periods (say, 30+ minutes), and just taking a shower saps me of what energy I have for the day (common among CFS patients).

I’m divorced and living with my elderly parents, the dream of every middle-aged son who once was independent with a decent career. I’m going to look into disability, but CFS isn’t an officially recognized problem for disability claims, so it’s hard to get.

A quick resume: MS in Communications with a minor in Political Science (1987); BA in Communications with Journalism emphasis (1986); 15 years as a newspaper editor (copy editor, news editor, managing editor); 10 years as a freelance field editor for a nonfiction book publisher.

I’ve gotten nowhere trying to do freelance writing or editing after the book folks stopped using field editors (and as slow as I had become, they weren’t going to keep me much longer anyway). I tried to do an online print business aimed at amateur radio operators, but that went precisely nowhere for more than a year before I shut it down. I’m out of ideas. What can I do at the crossroads of my skills and my illness to keep a roof over my head? I’ll answer any questions but will be cautious of threadsitting. Thank you.

posted by bryon to Work & Money (13 answers total)

CFS isn’t an officially recognized problem for disability claims

While it's obviously much easier to get if you have a widely-recognized disease, SSI/SSDI is technically function- rather than diagnosis-based. There's no definitive list of qualifying diagnoses that you have to be on. The impairment only has to be "medically-determinable." So I wouldn't give up on that yet. There are lawyers who will bring an appeal of a denial of an SSI/SSDI claim on a contingency basis (they get a statutorily-capped percentage of back payments), meaning no up-front expenses for you.

Good luck to you.
posted by praemunire at 11:15 AM on May 3, 2018 [5 favorites]

It sounds like you're looking for an activity with some education-based barriers to entry but which can be done remotely. Can you do search result evaluation? This would be with a company like Lionbridge. Additionally, you could look at writing content for the web (would require knowledge of search engine algorithms as well as ability to be concise and punchy).
posted by chesty_a_arthur at 11:25 AM on May 3, 2018 [1 favorite]

Here's the PDF document from the SSA that can help you document your disability for them.
posted by davcoo at 11:36 AM on May 3, 2018 [1 favorite]

Note that 80% of claimants are denied on their first round, but the stats are much better for appeals. You need an SSDI lawyer and should expect the process to take two years. Start now because the claim is backdated. Start this week.
posted by DarlingBri at 11:50 AM on May 3, 2018 [13 favorites]

Seconding disability. On the work front, I've had good experiences using UpWork for freelance work (They reject a lot of applications on the first try, keep resubmitting).
posted by likethenight at 11:53 AM on May 3, 2018

I have ME/CFS and I got disability on my first try because I had excellent documentation from a doctor who knew how to present my case because he had helped many patients with the same diagnosis through the same process. It would undoubtedly be an investment to travel to and see such a person, but it would be pretty likely to end in you getting what you need for a successful application. MeMail me if you like.
posted by jocelmeow at 11:57 AM on May 3, 2018 [3 favorites]

Submit your disability paperwork AND log onto your social security government account (this is also an aspect of applying for disability) because it will quote you an estimated monthly payment for disability. I JUST submitted my paperwork and expect to be rejected and retain a lawyer. I mention it, because even if you get granted disability, it's may not a living wage as it's based on an average of your past jobs (for myself they were retail and entry level jobs.)

First thing is trying to see a good specialist. There are treatments that can help. Get working on the health stuff as much as possible. A good doctor can help you gather your paperwork too.

Next, how many spoons (units of energy) do you have per day? Per week? Per month? Is there any sort of average?

Because you could perhaps do things that would be shorter term - editing or writing blog posts for a company, editing or writing resumes. Each of those would be smaller tasks, only likely taking a few minutes to a few hours at a time. Social media copywriting is also small - since it's basically micro blogging so each "post" would be short.

(I do truly understand where you're coming from. I'm unable to work a traditional job and only do my own work at the moment which breaks even.)
posted by Crystalinne at 1:02 PM on May 3, 2018

Are you able to write sometimes? Like, could you reliably write 10-15 hours a week if you had control over when that writing happened? You say fiction writing is out, but what about more structured forms of writing?

I ask because I think that copy writing, if you have a solid niche, can be pretty lucrative. Of course, finding the right niche and getting yourself known to potential clients is the hard part which can require a lot of energy and investment of time. But maybe you can do some of that through your existing networks? For instance, if you have friends/colleagues who work for non-profits, you could see if they need help with things like grantwriting and annual reports. Both of which are processes that, at a well-run non-profit, will be pretty slow-paced. And in my experiences with straight-up copywriting work (as opposed to projects that involve more strategy or coordination), I can pretty much do the work whenever works for me, as long as I meet the deadlines.

And I personally find writing where there is a particular structure and format, and where you're taking materials that already exist and re-working them (which is the case with a lot of professional copywriting) require A LOT less mental energy than creative writing (I can write 25 pages of fundraising materials in a week no problem, but ask me about that novel I keep abandoning because it's hard).

If you have questions about this, feel free to send me a memail.
posted by lunasol at 1:37 PM on May 3, 2018 [3 favorites]

Look into FlexJobs.com. It takes a while to root through all they have to offer, but they have several interesting skilled opportunities that often pay real rates — rather than scandalously low rates bid ever further down via competition from poor countries — for flexible jobs of all kinds, including work-at-home jobs. They also have high ratings from the Better Business Bureau and like organizations.
posted by Violet Blue at 3:30 PM on May 3, 2018 [2 favorites]

Have you explored narrating audio books? That might fit with your parameters.
posted by Marie Mon Dieu at 6:54 PM on May 3, 2018 [1 favorite]

You can learn how to code on your own and the vast majority of "real" remote jobs are in coding. You may not be able to compete for top tier salaries this late in the game, but you'll make more as an average junior coder than as a highly skilled freelance writer.
posted by ticktickatick at 5:19 AM on May 4, 2018

Have you truly looked into correlating conditions for CFS? I know someone who found out they actually had undetectable sleep apnea and cured their CFS with a functional nose job and CPAP machine.
posted by ticktickatick at 5:21 AM on May 4, 2018

This is just an idea, but what about setting up an online business where you offer to write bio's and write press releases for people? I'm thinking the younger generation, who are trying to get Instagram famous, or start independent businesses, but maybe don't have the writing or communication skills. I'm suggesting that because I just started my communications degree, and I get a lot of requests for side jobs like that. Lots of young people today want to try their hand at their own business, but don't know how to market themselves. I'm thinking this would be like a PR consulting type job.
posted by oracleia at 10:32 AM on May 4, 2018