The Cost of Chronic Illness and Maintaining An Income When You Are Chronically Ill

Cost of Chronic Illness

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. This is part of a two-part series, so stay tuned if this topic interests you.

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, we lost most of 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 had no money coming in, my first thought went to coming up with money each month to pay for my meds.

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 your 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 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!)

I’d love to know if you’d add anything to add to this list or how you earn an income if you’re working from home.

Feel free to bring up other factors we have to consider in the comments section. 

The Financial Costs of Chronic Illness
The Cost of Chronic Illness and Top 5 Expenses I Worry About The Most – My Several Worlds

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.)

The Financial Burden of Being Chronically Ill
The Cost of Being Chronically Ill – It’s OK to need meds to survive. What a month’s worth of meds can look like for some of us. Carrie at MySeveralWorlds.com

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.

READ:  What Is A Flare?

Obtaining disability 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.

READ:  Calgary Cityscape: Photo Essay

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.

Topical Pain Relief Alternatives in Taiwan
Pain Relief Alternatives in Taiwan. These are some over the counter pain relief alternatives that can be found in Taiwan.  – The Cost of Being Chronically Ill by MySeveralWorlds.com

 

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.

UNLOCKING

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! 

 

READ:  World Arthritis Day – Why It Matters To Me – Arthritis Everywhere
Carrie of My Several Worlds at Tzu Chi Hospital
The world is accessible to those who have their health. Those of us who don’t remain invisible. My Several Worlds.jpg

LIMITING

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.

STUDYING

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.

WATCHING

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

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.

Dealing with Chronic Illness
“Finding a way to live with the cards I’ve been dealt is always the most important part of this journey.” ~Carrie

 

 

Spread the love
  •  
  •  
  • 10
  •  
  •  
  •  
  •  
    10
    Shares
  •  
    10
    Shares
  •  
  •  
  •  
  • 10
  •  
  •   
  •  

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for chronic illness by WEGO Health and Healthline. Twitter @globetrotteri Instagram at https://www.instagram.com/carriekellenberger/. I also have a dedicated page for My Several Worlds at https://www.instagram.com/myseveralworlds/. Each IG feed features different content.

16 thoughts on “The Cost of Chronic Illness and Maintaining An Income When You Are Chronically Ill

    Shruti Chopra

    (August 21, 2020 - 1:55 am)

    I’m really glad the worst is over Carrie and I am feeling extremely grateful that you chose to share this all with us. It can be so tough to talk about work, finances, the loss/fear of losing money because our life depends on it – especially as a spoonie, lack of professional consistency can trouble my confidence levels and it’s really tough mentally to be depended on others. I know I will never stop admiring you, but reading this post, I know that I have a lot to learn from you and the experiences you share. Once again, thank you for doing that. I so hope your health picks up . Big hug of healing and love.

      Carrie Kellenberger

      (August 23, 2020 - 1:38 pm)

      Thank you so much, Shruti! I am hoping things are on the mend – as best as I can expect. Just keep resting, right? As for independence, my husband is well aware of how fearful I am of losing this and I appreciate his support so much with all of this. We just do what we have to do, right? Sending hugs and spoons right back at you!

    Anne

    (August 21, 2020 - 3:33 pm)

    I am truly grateful for my Countries health service and Social Security. I fear that it won’t be sustainable in the future, the government already has plans to privatise everything and introduce medical insurance. This scares me because when you have something really rare, like me, then you can’t get medical insurance anyway. Keeping a pain journal is vital for so many reasons. I update mine daily and it’s really helpful for me and my doctor.

      Carrie Kellenberger

      (August 23, 2020 - 1:41 pm)

      Hi Anne,

      It scares me too. My husband really wants to move back to North America and we’ve been holding off on those plans since 2015, mostly because of my health, but also because we felt we couldn’t run our business as effectively there. Plus the access we have to health care here is excellent, it’s just sad that after 17 years here, I’m still ‘other’. An immigrant. And as forward-thinking as Taiwan is, we are all still treated as ‘other’, no matter how much we contribute in every possible way. That’s frustrating for all expats here, not just me.

      As for journals, I’ve kept them since I was a young girl, so it seemed a natural move to start a pain journal right away. I have a handwritten journal, but I also have an app on my phone that charts my pain in graphs and pie charts for my doctor to see. This helps immensely during my appointments since I’m navigating my appointments in Chinese. These graphs are much easier for him to understand than my Chinese. (It’s not bad, just not as effective for either of us.)

    Claire

    (August 21, 2020 - 9:18 pm)

    I always say that I’m not rich enough for my chronic illness life, because it really does seem to be that doesn’t it – you have to have a very good income to afford all the expenses you mention. I’m lucky that I have the NHS, but I still have to pay for private appointments as my rare conditions aren’t ‘covered’ adequately by it. The pandemic has thrown the precarious nature of caring for ourselves into sharper focus I feel. I really hope that things improve for you. You are so industrious, and should be so proud of being so.

      Carrie Kellenberger

      (August 23, 2020 - 1:43 pm)

      Exactly! The private appointments are costly. I can do Chinese foot reflexology here for a decent price that is affordable, but the other stuff – it’s just not possible. Most of my money goes towards food that won’t make me sick. (If I haven’t spent it on meds and supplements.) It would be nice to have the whole package with complete care, wouldn’t it? A dream come true! Thanks for stopping by, Claire!

    Cynthia

    (August 23, 2020 - 11:37 am)

    I am so thankful for these monthly linkups! I have reached a level of absolutely no energy for socializing online, it just takes too much out of me right now. At least with the linkups, I am able to find out what everyone else has been up to. Hugs and wishes for more energy!

      Carrie Kellenberger

      (August 23, 2020 - 1:44 pm)

      I noticed you haven’t been online as much – same as me. I figured you might be going through the same thing. Zero energy for anything. I really pushed myself to get this entry in, but the rest of it has been left for another time. Rest is best! Sending spoons, Cynthia! Lots of love too.

    Alison Hayes

    (August 24, 2020 - 4:59 am)

    Carrie,
    Thanks so much for sharing – I’m really glad that the worst is over for you and wish it hadn’t been so very challenging! Here in New Jersey we’re in this weird semi-lockdown. Things have loosened up, but I’m really concerned about the wave of COVID continuing. The first wave still isn’t over here and with fall around the corner, I’m worried about the flu making things more difficult in general.
    Sounds like you’ve had plenty on your plate and your medicine expenses feel astounding to me. I’ve been hesitant about trying a new medication that would cost me about $300/month, which is much more than all my current medications cost put together. I am fortunate that I don’t have huge medication needs and that what I do use is generally available as a generic(making it cheap to free). Balancing the money can be a hard task and I feel for you there.

    I hope that things stay more manageable and that you recouperate quickly!
    Alison

      Carrie Kellenberger

      (August 27, 2020 - 3:52 pm)

      Hi Alison!

      Thanks so much for stopping by again. The worst is over, but wow, 30 days in now and I’m still really sick as of July 27. This is ridiculous! Ah, well. Such is life. I’m hoping the meds kick in soon, but it’s so frustrating spending this much and still being so limited and still in so much pain. We know it’s related to the extra work and stress. Healing takes forever for me. Time will tell and I just hope the meds do their job.

      We’ve just started school here in Taiwan and the government has once again asked everyone to go back to wearing their masks in public. They’re just being cautious. I would be surprised if we experienced a second wave here given the strict measures that our government put in place in January, but you never know. At least people are being respectful about it and covering their face.

      They’ve also announced early for the flu shot this year and that kind of freaked me out but I guess we have a cautious government that wants everyone to be safe and informed. I’m very concerned about what is happening in the US and Canada. Our 15-year-old son is in Iowa and he just returned to school. No masks. No real plans for dealing with an outbreak if it happens there. 🙁

    Katie Clark

    (August 25, 2020 - 12:57 pm)

    Boy, I wishing magic. I woulduxeitup on you. But al. I can say is you are an amazing human. I’m praying that finances continue to improve and your flare calms.

      Carrie Kellenberger

      (August 27, 2020 - 3:53 pm)

      Me too. What a mess, Katie. But the highlight is that I STILL HAVE A JOB! For now… 🙂

    Rhiann

    (August 29, 2020 - 9:30 pm)

    Hi Carrie, thank you once again for sharing such insightful and thought-provoking thoughts in regards to finances and chronic illness. You did a great job in using this month’s prompts to discuss this often overlooked aspect of chronic life. I hope that your flare eases soon and your finances improve. Take care and much love xx

    Laurie Hanscom Harmon

    (August 30, 2020 - 4:23 am)

    I love your positive attitude. I am glad the worst seems to be over and glad that you still have a company left.

    Sheryl Chan

    (August 31, 2020 - 9:03 pm)

    Thanks for joining us once again, Carrie. I always love having you around 🙂 I’m really sorry to hear about the work situation and subsequent payback. I too am experiencing it to a certain level and it really is no fun. Sometimes you wonder if the effort was worth it but you know you just had no choice. But as life goes, this too shall pass. Sending lots of love!

      Carrie Kellenberger

      (September 11, 2020 - 4:02 pm)

      Hi Sheryl! Yes, it has been brutal. I’m trying to branch out now as much as possible with other clients. Hoping I can keep up with it all. We all do our best, right? So sorry for the late reply. This first part of September, I’ve been revamping things here and I’ve added an SSL certificate for added protection. I’m hoping people don’t find any more issues with my site! LOL. Spoons!

Leave a Reply

Your email address will not be published. Required fields are marked *