Making Money When You Have a Chronic Illness

It doesn’t pay to be sick.

When you have a chronic illness, generating income can be difficult. For some, it’s impossible. Living with constant pain and constant fatigue is stressful enough; not being able to pay the bills shouldn’t be an added issue — but it usually is. Because in addition to all of your usual stuff — mortgage, insurance, car payments, utilities, etc. — you’re also burdened with ever-increasing medical bills.

What an utter absence of anything resembling a blessing!

How do you live with a chronic invisible illness and make income? How do you provide for your family if your quality of life prevents you from working?

This has been a huge struggle for me since I was diagnosed with Lupus four years ago. Working is made so much harder by pain, fatigue, and brainfog, along with regular stomach problems, frequent colds and sinus infections (Lupus compromises your immune system), and countless other “little things” that add up to a whopping big mountain standing between me and the ability to pay the bills.

For many of us, office work is out of the question. There are several days a month when I’m completely unable to function — and I never know when one of those days is going to strike. How can I be counted on to work regular 9-to-5 hours in that situation? No employer in the world is going to be terribly understanding when you don’t show up to work.

There’s also retail, which typically requires standing on your feet all day and interacting with customers in a pleasant way. The standing part is not possible for me and most other chronic illness patients; and I can’t speak for you, but when I’m having a bad day physically, it’s just not possible to fake warmth and pleasantness. And you don’t even want to be around me when I’m on Prednisone!

So… Short of attempting the nightmare that is the application for disability (a loaded topic for another day), what can you do?

Personally, I’m always looking and praying for that One Big Idea. The thing that will turn our situation around. Something I can do, right now, that will make an immediate and profound impact on my family’s crushed-under-debt finances. And there are options and possibilities. You have to be careful, though. There are tons of opportunities out there, but too many of them will pay you far less than you’re worth.

Here are some of my favorites, all of which can be done exclusively from home. The best part: there’s no entry fee for any of them.

YouTube

YouTube is not what it used to be. Sure, you can still upload any video you want, but it’s a serious business now. There’s big money to be made on YouTube if you can attract a large enough following. There are tons of vloggers and video creators who make their entire living on YouTube — and many of them are rolling in it.

Pros: Just look at the trending videos to see that anyone can create a video that millions of people will watch.

Cons: Consistent posting of videos is required if you intend to be successful, as is good equipment like a quality camera and powerful editing software.

Fiverr

Whatever you’re good at, someone out there will pay for it. Fiverr lets you charge five bucks a pop for performing simple tasks.

Pros: Fiverr is a brilliant idea, and its system couldn’t be simpler.

Cons: You’ll need a truly unique skill or idea to stand out from the crowd.

Etsy

Crafty? If you can create handmade goods — decor, clothes, accessories, etc. — Etsy is the best place to sell your stuff.

Pros: A huge customer base comes already built in.

Cons: Like most everything else on this list, the challenge will be attracting customers within a very crowded market.

Skillshare

People are always interested in learning new skills to broaden their horizons or create their own businesses. Skillshare is a for-pay website where anyone can create an educational course about pretty much anything. Courses consist primarily of instructional videos, but often there will be downloadable documents and templates, as well. You get paid based on how many people take your course.

Pros: It’s such a simple, smart business model, it’s hard to believe no one thought of it before. Skillshare’s system and user portal are silky smooth, easy to use, and beautiful to look at.

Cons: As with YouTube, the hard part is making quality video content. You’ll need top of the line recording and editing equipment to make your course worthwhile.

Write an eBook (or Blog)

Everybody knows that blogs are a big deal online. You’re reading one right now. Monetizing them can be challenging, but it is doable. An easier way of creating income for writers is instructional ebooks. You write it, publish it on Amazon, Nook, iBooks, etc., and you’re good to go. As I said before, whatever it is that you’re good at, there are people in the world who will pay to learn from you how to do it.

(Did you know that many great ebooks started out as blog content?)

Pros: If you’re a writer, creating an ebook won’t be much of a challenge. It will probably even be fun! It’s a once-and-done project, too, though you’ll want to put some time and effort into promotion.

Cons: Amazon and Barnes & Noble have online systems for self-publishing, and both of them are criminally clunky and unreliable. It’s as if they were built by people who utterly despise ebooks, writers, and words.

Create T-Shirts

The specialty t-shirt market is booming. There are dozens of websites where you can find unique tees these days, many of them populated with designs created by talented artists. You don’t have to be a gifted artisan to create a successful t-shirt, though. Zazzle, Cafe Press, and others make it easy to create a delightful t-shirt design. Most of these places let you put your words or images on other kinds of products, too.

Pros: Inventory and shipping are not your responsibility. They’re handled entirely by the website.

Cons: The website takes a not-small percentage of your profits.

Sell Your Photos

Right now, somebody somewhere needs a photo you already have. Take your most artsy or beautiful photos and turn them into cash by uploading them to smartphone apps like Snapwire, Agora, Foap, and others. They’ll make your image available to publishers, who pay a royalty fee to use it. Anyone can sell their pics, and they’re treated like any other product: you get paid based on how many people pay to use your photo.

Pros: With just about every app I’ve tried, it couldn’t be easier to upload and post your photos. Look on your own camera or phone and chances are, you’ve already got at least a handful of pictures that are unique, beautiful, and potentially valuable.

Cons: People looking for stock photos, like print magazines or big-name websites, tend to need very specific niche imagery. Matching what you have to what they need can be a serious challenge. Don’t expect to make big bucks at this unless you’re a pro.

Create an App

I know that unless you’re a programmer, the very thought of this seems like an impossible task. But hear me out.

Apple has made a priority of teaching programming to anyone who wants to learn. To that end, they’ve created this amazing iPad app called Swift Playgrounds (“Swift” is Apple’s app language) that subversively teaches you the principles of coding in the form of a fun, clever, user-friendly video game. It’s a free download, and literally anyone can pick up programming skills by using it.

Pros: Finally, learning how to make apps is accessible to anyone. You don’t have to have a degree in computer programming. You just need an idea.

Cons: You have to have an iPad. Swift Playgrounds is not an overnight investment; expect to spend weeks if not more learning the fundamentals of Swift. Fortunately, the game is so cute and fun to play, you won’t mind.

Do Small Tasks

Head over to Amazon Mechanical Turk, an online system where anyone can sign up to perform quick, easy tasks like proofreading a product listing or giving an honest opinion. You’ll get paid for each one you complete, and if you’re efficient, you can easily accomplish dozens in a single day. Also see: Field Agent, Easyshift, Gigbucks, Task Army, and more.

Pros: No prerequisite skills required. If you have a computer with an Internet connection or a smartphone, you can perform any of these tasks.

Cons: The majority of available tasks pay very small amounts of money. Some pay more, some pay as little as a penny. So you’ll need to accomplish hundreds of well-paying tasks to see any significant income.

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Where’s Our Representation?

The big hotness in Hollywood right now is “diversity.” All races, ethnicities, orientations, and whatnot are being represented in film, television, stage, video games, novels, and more.

So where’s the representation of chronic invisible illness sufferers? People like me and you, with Lupus, Fibromyalgia, Dysautonomia, etc.? It’s true that some better-known illnesses like Depression and Multiple Sclerosis are featured sometimes on TV dramas — particularly the ones that take place in a hospital setting — but when was the last time you saw someone in a movie or on television suffering from Crohn’s Disease or Chronic Fatigue?

(Just don’t get me started on House. I will always despise that show for the stupid “It’s never Lupus” meme it spawned. To this day, you can look up “Lupus meme” on Google and the vast majority of results will have Hugh Laurie’s smug face on them. Thanks to House, more people know Lupus as a punchline than a real, life-altering, life-threatening disease.)

It’s said that nearly half of all Americans suffer from one or more chronic invisible illnesses. Nearly half! That’s incredible. But the public at large still knows so little about these diseases that one of two things is happening here: either Hollywood has no idea how to depict a chronic invisible illness, or they choose not to because they believe that things like a heart attack or a cancer diagnosis provide better dramatic fodder.

How can everyone be getting representation in pop culture these days if the day-to-day reality of nearly half of the American population is being ignored? I wonder how long it will be before we get equal representation. What we need is a prominent Hollywood writer or other creative who’s willing to learn about Lupus, Fibro, or any other chronic invisible illness and then show what it’s really like, with care and attention to detail.

And that’s a problematic notion for TV and film, because it couldn’t be a one-off story arc. If it’s talked about once and then never mentioned again, then it’s completely missed the point. Chronic illnesses never go away. You don’t have to talk about them all the time, but you can’t pretend they’re not there, either.

Right now, the measurement of chronic invisible illnesses in entertainment is at zero. We’ve got a very long way to go.

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I Feel Bad for My Kids

You know how when you have a terrible cold or the flu, and all you want to do is stay in bed? If you’re young or single, you might be able to get away with that, but parents are a no-go. There are kids and responsibilities and stuff. Now imagine feeling sick every single day of your life — while trying to be the parent your child needs.

This is what life is like for chronic, invisible illness patients who also happen to be parents. You love your kids, you would do anything for your kids — even die for them — but you’re saddled with severe limits to what you can and can’t do for or with them.

I have two children, both under the age of ten. I have a brilliant, sweet son, and a beautiful, tenderhearted daughter. They’re funny and crazy and smart and wonderful and I love them unconditionally. But I feel bad for them, because they never know which “Daddy” they’re going to get.

Will today be a day for fun, playful Daddy who rushes into the room to tickle them and hug them and play with them? Or is this a day when of sick Daddy, who can’t concentrate on what they’re saying, can’t move a single muscle without hurting, and seems like he’s in a bad mood because he can barely keep his eyes open? That second guy is seen a lot more often than the first one.

It’s not fair to them. They deserve a dad who can do all of the usual “dad stuff.” They don’t deserve a dad who can’t go outside and play because he has to avoid direct sunlight. They should have a dad who can give them quality time, not one who’s either too tired to move or desperately trying to find work to help pay his endless medical bills (and all of the other bills that are affected by an inability to work consistently).

Right now, “quality time with Daddy” usually equates to sitting next to me on the couch, particularly on the bad days. I talk to them and listen to them and cuddle them (my daughter especially loves cuddling!), and they’ll bring me drawings and Legos and other stuff they’ve made, looking for approval. Of course I always love everything they do and rave over their creations. Sometimes they’ll watch me play video games, or I’ll watch them. On really good days I might play a board game with them.

But that’s about all I can offer. There are many who tell me that the love I give them is enough. That it’s all they need.

That’s not reality, that’s a song lyric. A fairy tale lens clouding up real life.

They need love, yes, absolutely. But they have tangible needs, too. They need a normal dad who can do things with them and for them. Instead they’re stuck with this sick, grumpy guy. And the worst part might be that most of the time, they don’t realize that this isn’t what other kids have. They have no idea what they’re missing out on.

I’m not on my deathbed or anything; I do okay most of the time. But on those bad days when I can’t function, my heart is flooded with regrets because my horrible, invisible, chronic diseases are affecting my kids just as much as they affect me.

And that’s not okay. So I fight. And I’ll keep fighting. I’ll rail against my limitations. I’ll push myself ever-harder. Because I have to hope that one day things are going to get better and easier. And because those two kids deserve it.

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Fibromyalgia Loves to Mess With You

When you’re feeling a symptom that’s new and different… How do you know when there’s something really wrong? How do you know when it’s time to see your doctor?

The problem of Fibromyalgia is that you exist in a state of constant sensory overload — in an internal sense. In other words, your own body is forever giving off loud signals. Often it can be so deafening that it drowns out external stimuli.

(Incidentally, if you live with or know someone that has Fibromyalgia, please go easy on us. We don’t mean to outright ignore you, be distant, behave in a socially awkward way, or become completely self-absorbed at times; sometimes the “noise” our bodies gives off just makes it impossible for any other signals to get through.)

It’s very common, in my experience, to feel new pains, symptoms, or sensations on a frequent basis. The issue that arises from this is that it can be hard to tell when to take one of those new sensations seriously. (Not to mention that you might find yourself wondering if you’re losing your mind.)

Example: Right now, I have a strange pain on the top of my foot. It appeared yesterday out of the blue, and it’s making walking a little harder. It feels like a couple of bones are grinding against each other. Did I injure it in martial arts class? Did I hit it on something? Did I sit weird and affect a nerve somewhere? Or is it simply a random cramp that will go away? I have no clue. Should I call the podiatrist? Or wait and see what happens?

I usually opt for the second route, usually to the displeasure of those around me. The thing is, if I went to the doctor every time there’s a weird new pain or symptom, I’d be there almost every day. Because with Fibromyalgia (and Lupus, and POTS), there’s always something.

The really aggravating “somethings” are the ones that get worse… and then get better, entirely on their own. Which usually happens after you’ve had something wrong for a while, gone to the doctor, had them run tests only to find nothing, and then a few days later the whole thing suddenly, inexplicably self-corrects. You can practically feel the people around you thinking about how much of a hypochondriac you are — because you’re thinking it about yourself!

I can only speak for myself, but it’s late afternoon or evening before I can adequately assess how I’m feeling on a given day. Maybe my shoulder is more sore than usual today because of something I did yesterday. Maybe it’s indicative of a flare or another bigger problem coming on. Or maybe I just slept on it in an awkward way. I can’t say one way or another until I’ve had time to live with it a while, see how it reacts to my day-to-day routine, determine if it’s improving or getting worse… And by then, it’s too late in the day to see a doctor, anyway. Plus, many days I wake up with brainfog that doesn’t clear until at least mid-afternoon — if it clears at all. How am I supposed to know how I’m feeling if I can’t even think straight?

So. How do you know when to see a doctor? I really don’t know. If you’ve read my book, you know that I’m “Mr. Listen-To-Your-Body,” so you’d think I’d have this process all figured out. Something like, “If it feels this bad, that’s worthy of a doctor’s visit. If it’s less so, then wait it out.”

But I don’t. I’ve got nothing. I’ve erred on both sides of this equation more than once. The best advice I can offer is to (say it with me) listen to your body and do the best you can with what you’ve got.

Fibromyalgia or not… Do you have any history with trying to know when it’s “bad enough” vs. when it’s a bizarre fluke that will go away on its own? Please share your experiences with this, I’d love to hear them.

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Topical Painkillers

Have you ever wished that you could rub a painkiller into your skin instead of taking so many blasted pills? If only topical painkillers — ointments or creams that contain pain medication — were a real thing.

Well, they’re starting to be. I’ve recently come into possession of two different kinds, both of them prescriptions. It occurs to me that this presents a unique opportunity. Why not try them both at once and see which works better?

I have constant pain under my shoulder blades, and they’re bothering me quite a bit right now, so I’ve applied one topical painkiller to one side, and the other to the other side.

Let’s meet our contestants!

Pennsaid

First up is an ointment called Pennsaid. As I understand it, it’s very new to the market, only recently having been approved by the FDA.

Normally this stuff is obscenely expensive, but my rheumatologist has a deal worked out with a North Carolina pharmacy where either they’ll get your insurance to cover most of it, or they’ll simply charge you $10 for a bottle if your insurance won’t play ball. My case fell into the latter category.

So for ten bucks, I got a 3.8oz (112 gram) bottle with a pump dispenser on top. The active ingredient in Pennsaid is “Diclofenac sodium.” I don’t know about the sodium part, but I know that Diclofenac (in pill form) is commonly prescribed to reduce inflammation.

Pennsaid has an appearance and consistency very similar to baby oil. It’s a clear, runny fluid — thicker than water but much thinner than cream. The instructions that came with the bottle — which were extensive — state that you should pump it twice and then rub it in well to whatever effected area you’re applying it to. Then wash your hands thoroughly after.

Disclaimer: The Pennsaid bottle and instructions say that it is intended for knee pain, and not recommended for other uses. My rheumatologist assured me that, like many other drugs on the market, that is a legal requirement to protect the company that makes it (Horizon Pharma USA, Inc.) and that the ointment can be used for other purposes. He did suggest not applying it anywhere on my head! Not that I was going to.

It does not say how long it will be before you feel the effects, nor how long the effects can be expected to last.

Lidocaine Ointment

This one is a generic, and I don’t know what the brand name version is. To be honest, I’m still a little fuzzy on how I got my hands on it or who helped me get it. I clicked on ad on Facebook that talked about pain management for chronic pain sufferers, filled out a little information — I thought it was for a research study — and then one day I got a phone call about it. I thought they were trying to sell me something, but I dutifully answered their questions. Next thing I know, I’m getting notifications that an order has been placed at a pharmacy I’ve never heard of, my insurance is covering this one (presumably because it’s a generic), and I can expect a package in the next day or two.

And so I received a surprisingly heavy little box that contained not one but two bottles (seen at the top of this page). Or well, a bottle and a jar. This topical painkiller is applied in two parts, apparently. I know this not because there were detailed instructions that came in the package (there weren’t), but because there are “Step 1” and “Step 2” stickers applied to the lids.

The first step is another pump bottle, this one labeled “5% Baclofen” and “5% Diclofenac.” (Hey, that sounds familiar.) This stuff is a white cream, very much like the kind of lotion you’d put on dry skin. Dispense a specific amount of it, rub it in, and wash your hands.

Step 2 is the jar, which is large enough that it could almost be called a tub. Inside is something similar in appearance and consistency to petroleum jelly. This container is labeled “Lidocaine 5% ointment.” You’ve probably heard of Lidocaine; it’s what dentists typically use to numb your gums before working on your teeth. Grab a little of it, slather it over the same spot where you rubbed in the first stuff, and (you guessed it) wash your hands. 

Similar to Pennsaid, no details are provided about when it will take effect or how long those effects will last.

And the Winner Is…

Rather unexpectedly, I seem to be getting better results from Pennsaid. I didn’t see that coming, because both medications have Diclofenac (the inflammation reducer), but the Lidocaine ointment comes with two other painkillers as well. Strange that the one that’s only got Diclofenac produced the superior results.

I should point out that this exercise was hardly scientific. It’s very possible that the pain under one shoulder blade was less than the other before any ointments were applied. It’s also possible that I may have used more or less than the proper amounts of the various ointments.

On the whole, I’m encouraged and excited that powerful, prescription topical painkillers are finally becoming a thing. Products like BenGay and Aspercreme are great and all, but they don’t usually produce sufficient results to make using them regularly worthwhile.

That said, in all honesty, I think I’ve gotten more beneficial results from BioFreeze. But admittedly, I probably haven’t used either of these prescription ointments enough yet to know their full potential.

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