The Cost of Chronic Illness and Maintaining An Income When You Are Chronically Ill
You’ll never think of the cost of chronic illness and maintaining an income until it happens to you. This month’s article is dedicated to the financial burden and cost of chronic illness.
I have worked from home for over a decade through our own business. My work has never been affected before, aside from the hours I keep depending on how I feel.
In March 2020, we lost half our business and suddenly the majority of my work from home paycheck was gone. Millions of other people around the world who were affected by the pandemic are in the same situation as me. But when we realized we would have no money coming in for months, my first thought went to coming up with money each month to pay for my meds. I did a cost analysis breakdown of what it takes to keep my body going. I was shocked when I broke it all down. Patients are always aware of the main expenditures with maintaining their health, but I’ve never looked at ALL of it before knowing my monthly income had just taken a huge hit!
It is a very scary place to be and I’m still reeling from what happened. Luckily, I was not caught flat-footed. I always have other streams of revenue coming in. (My mom is great at reminding me of this! She keeps telling me I’m the only person she knows who gets so creative with earning.) But the stress plus the pounding pace I was working at this summer when I had to take on extra work made me very sick.
The biggest takeaway from this article is that it is scary to lose your income when you are ill!
My monthly med costs are over NT$30,000 a month WITH health insurance. Although finances are always a worry, this is the first time I’ve ever experienced gut-wrenching fear about losing access to my meds.
Accessing disability here in Taiwan has proved impossible. Perhaps you’re like me and can’t access disability services. Even with disability, many of us cannot meet our monthly medical bills.
I know plenty of patients who work from home. A great number of us are artists and this helps with medical expenses, but who’s going to buy art when the entire world is in financial straits?
The Cost of Chronic Illness
The cost of chronic illness isn’t just hard on your wallet. Medications, alternative treatments, and hospital visits are just one main factor. There are many factors to consider when you look at the cost of chronic illness, including the emotional burden of being in financial straits. (Saved for another day!)
So here is a brutal breakdown: This image represents the cost of chronic illness.
It provides insight into how life looks for some of us on a daily basis. This is what $1,000US worth of medications looks like – one month of medications. I’m still not taking my full dose of Enbrel. It’s too expensive. However, Enbrel has kept me out of a wheelchair. (I spent most of 2018 in a wheelchair until I got access to Enbrel.)
Maintaining An Income
The hardest part about maintaining an income when you are ill is obviously your health. I never know how I’m going to feel from hour to hour, so I keep my hours flexible and work when I can. I’ve been running my own business from home since 2010, shortly after I received my diagnosis. At that time, I had no idea I’d need to work from home in the future. One thing that has never changed is that I am constantly ‘catching up’ on days I’ve missed. The downside to working from home is that you never leave work.
Obtaining disability, as I’ve mentioned, is not an option for me in Taiwan.
For the past decade, I’ve maintained diverse sources of income so I always have money coming in. On LinkedIn, officially I’m a recruiter and communications consultant. When you’re in recruiting, business ebbs and flows. This has allowed me to continue working as a freelance writer, editor, and publishing professional for over 15 years. You might be surprised to learn that I’ve written over a dozen books and that I’ve created dozens of websites. I help businesses with their communications platforms as a media strategist and work as a content creator. (Hard rule: I don’t write for free.)
Feel free to drop by my LinkedIn profile to have a look at my work and references. My freelance work is done through word of mouth. I’m not on freelance sites.
Art classes happen on weekends if I’m up to it. As a creative, I’m flexible with art classes and I’m lucky that people want to learn from me. Although I’ve retired from running my own jewelry line, I still host DIY classes in my home. I’m also a floral artist and I’m grateful for the commission work I’ve had this past year.
All of this has helped me to maintain a salary that covers my medical expenses.
Diversifying work is key.
Getting creative with bringing money in each month is key when you’re sick. How do you do it?
What happened to me this year
We own a recruiting business that helps education institutes and schools around the world find ESL teachers. Our business is indirectly tied to the travel industry because we assist teachers in moving abroad.
Our business operates in many countries around the world, but most of our teachers head to South Korea, China, Thailand, Vietnam, and Taiwan. We shut our China program down on January 27th 2020 when we realized what was happening with the COVID19 pandemic. Within two months, our business in Korea shut down when they experienced their lockdown in late February. When Taiwan shut down in March and imposed travel bans, suddenly we were scrambling to find out if we had a company left.
Korea is still going, but the work we had this summer was based on my program in Taiwan. I worked from March to the end of July having no idea if I was working for nothing.
To have it all on the brink of disappearing was something we never expected. I’m proud to say that we were able to work things out with our staff and we made it through until June when entry visas were relaxed. Suddenly, I found myself working as a defacto immigration consultant for Taiwan in May due to working around strict government measures to bring teachers into Taiwan. And wow, do they want in! I’m sure you can imagine how many people have been trying to get out of hard-hit countries in the past six months.
I’m happy to say that all my teachers arrived and they’re fine. They’ve gone through quarantine and are now working at their new jobs in a beautiful country that is virus-free.
Why I haven’t been online and the alternatives I’ve used to help control pain
I’ve been so busy trying to survive and keep what’s left of my business, I blew through my energy reserves. I’m really sick right now. Physically and emotionally, I’m a mess and I have no idea how long this is going to take to ‘bounce back’ from.
This is the price we pay as Spoonies. We put time into something knowing it will cause a crash and the payback will be severe. What a price to pay!
Since there was no time to pace or manage this summer, I’ve landed on strict bed rest.
I’m struggling to have basic conversations right now. I’m hoping I’ll be feeling better by September or October. I’m making full use of my pain relief arsenal this summer on top of my meds, plus hot magnesium baths three times a week to help with pain.
As usual, I’ve used A Chronic Voice’s writing prompts to complete my article with personal observations/reminders.
It feels like I’m the only chronic illness blogger I know that hasn’t been in official pandemic lockdown. Taiwan never entered lockdown and I still never leave home! I’ve been on lockdown for years because of my diseases. So there weren’t any huge changes for me to adjust to since I was already living it.
Did I unlock my work potential and hit new heights with crazy challenges for entry visas with teachers this year? You bet! I also took on more work than I’ve done in two years. I’m not surprised I’m so sick now.
Do I wish I could unlock the secret to finding a cure for my illnesses – DOES THIS EVEN NEED TO BE SAID? HELL YES!
Once again, I learned a hard lesson with my limitations with illness in July. Usually, I have a very strict work rule that serves me well, but I had no choice in July. I surpassed my limits and of course, I got sick.
Now I need to limit everything I do. I couldn’t pace for pain management in July because of work. Because of the state of my health now, I’m extremely limited to what I’ll be able to do over the next few months.
This summer, I’ve studied my pain journals again. Here is where I urge you to study and compare every year! Study what is happening to your body each day. Then go back over what happened in previous years to identify patterns with your illness.
Pain journals are reminders that your body has been there before.
For example, I’ve learned that the first week or two of every August for the past five years has included heightened flare activity. I’m still not feeling like my regular crappy self, but healing takes time. I’m glad I kept journals to look back through. Even reviewing blog articles on this site from 2012 onwards is helpful. It reminds me that my thought patterns have changed a bit even if my body hasn’t.
I’m watching how my body reacts every day now and paying close attention to the extreme ups and downs. I have made a real effort not to let my thoughts go to dark places.
I’ve been trying not to watch what is happening in the rest of the world, but it’s hard to look away. I scaled my news intake back for all things related to America. It has been a bit harder with Canada because I’m watching my hometown news and news from Ontario, but that’s just what you do when you’ve got family and friends that you’re worried about.
Healing – the journey never ends. Especially when you are always worrying about how to continue paying for the healing process.
My goal is always to remain stable. Sometimes I fail at this and that’s ok.
Finding a cure is never the goal. I don’t think it’s possible to do any more healing this year, but I’m grateful the worst is over.