A Sick Chick’s Thoughts on the Amazon Boycott

It was Prime Day, the summers answer for Cyber Monday or Black Friday, but of course, it’s all on Amazon. Whether it’s being pissed off that the site was frequently down, or that the deals weren’t what you wanted, it’s a guarantee that someone somewhere is upset. There were definitely valid concerns behind the call for a boycott, including how Amazon hurts smaller bookstores and a lot of authors. There were also valid concerns over how the company treats warehouse workers.

So did I boycott? No. 

Yes, I’ve had jobs that sucked, involved tedious work, with a ton of standing, and I’ve had break rooms that are as far away as my break itself is. I also miss seeing little bookshops around town. Whenever I can, I do choose to shop in store for  books. I also tend to read a lot of smaller authors, who may have a series or two, but aren’t always super well known. Sometimes they are, but if the book series is 10 books long, and those books are FREE on Kindle, I’m going to read for free. I will, however, try and buy the first or second book (depending on if there is a sample or not for me to judge how far I’ll get into the series.) The book I buy, I often end up giving away. This ends up not always benefiting the author in the long haul, but hey, I tried.

I’m poor.

I can’t afford to buy every book I read, even digitally, so when I have something like Prime Unlimited, I don’t just want free books, I need free books. If I can afford a book, I’ll buy a hard copy of it. Some books, from authors I know and love, I’ll buy the hard copy because I’ll know I’ll want to share it with someone. I have books that have been passed along so often, I wouldn’t be surprised if one came unexpectedly back some day.

I’m Disabled 

Amazon in general, makes my life possible. I’ll have my roommate get some groceries for me when he’s out, but I prefer to be as independent as I can be. The best way to get groceries right now, for me, is to order them through Prime Now. I have stores to choose from, but Amazon tends to have the best prices. Other items I may need, are also often procured via Amazon. When the world begins to strip abilities from you, you cope. I do hope they come up with a way to make their warehouse employees happier, but I also recognize that a lot of warehouse jobs are just difficult. It’s repetitive, manual labor. There are things that Amazon can do to make these employees’ lives better, and we should find a way to hold them accountable for their actions.

But don’t HATE me. 

Friends were upset when they found out I shopped on Prime Day, but there were a few things I already needed, and they were on sale, so of course I shopped. Many more are still boycotting Amazon, and are irritated that I won’t. I’m writing this, and then I’m placing an order for melatonin. It has been far too hot for me to even use my wheelchair to get to the store and buy things, even little things. I am not a cold human being. I understand that the employees are unhappy, and that a giant company is squashing smaller business through just sheer domination of the market. I also understand that I have needs as a human that this giant dominant entity is capable of providing me with

You do you. Boycotts are great, and walk outs are great, too. Attempting to unionize, pushing for certain legislation, all good ways to make a statement. Just don’t come down too hard on the people who opt not to participate. Some of us need companies like Amazon, because we aren’t physically capable of getting through our sick people lives without them.

The Financial Impact of Chronic Illness

As I’ve mentioned before, I am in the process of getting divorced. In my case, it has been over two years, and the divorce still can’t been finalized. Financially it’s been a difficult two years, with a cross country move, knee surgery, and severe worsening of my Behcet’s. I’ve been lucky to have insurance that covers most of my medical expenses, but when I lost the ability to work, things became difficult. After tearing through my savings, selling whatever I could, and doing my best to keep my bills as low as possible, I’ve found myself and an economic cross roads.

I want nothing more than to go back to work. For my entire life, I’ve worked, and being out of work makes me feel bad about myself. When my Behcet’s began worsening, I just job hopped, hoping I could find something that worked for me, while I got my symptoms under control. The problem was that my symptoms never really got better. During chemotherapy, I was getting temporary disability, which made the basics affordable, but not by much. I moved to a more affordable apartment, but then lost my temporary disability, making it just as unaffordable as the more expensive unit had been. My first two applications for disability were denied, and I was told to await a court date. That date would like be 18-24 months away. On top of that I lost my electric discount, and my EBT benefits, because both required an IRS form that I didn’t have. Last year I made so little, that what I did make was technically owed to me. I also expected to get more back on taxes if my ex and I filed jointly, because I had more in deductions than I had in earnings. Too bad he filed without me, and didn’t tell me.

As it all piled up, I began to become more depressed. Lately there has been a lot of anger, too. It isn’t as though I’m being lazy on purpose. I genuinely don’t know from one day to the next, what I’ll be physically capable of. Sure, once I get my wheelchair, my ability to work a desk type job, is more likely, but it’s definitely not guaranteed. Friends have begun pushing me to find something, because they think I’ll be happier once I’m working. What they don’t realize is the level of stress taking a job would create.

For starters, I can’t drive. My work day, even if it were short, would be lengthened by the commute factor. If I’m really sick, I’d end up using Lyft or Uber, which would of course cost me more. When you factor in the lower wages of most desk jobs, it just doesn’t make a lot of logical sense. Then you have my inability to be reliable. The day of my interview, I couldn’t walk because of my pain level. I was also insanely weak. I don’t have an adequate warning for this. Lately I’ve felt bad most days, but the days when I literally can’t function, are hard to predict.

Perhaps the biggest issue is whether or not I’m going to continue deteriorating, and what treatment options I’m going to undergo. Neurology suspects my neurological symptoms are going to get worse, and if the past is any indication, they’re correct. My GI issues are definitely worsening, and that means I’ll likely be getting another endoscopy and colonoscopy. (I’m fighting this as hard as possible because of issues I have with the preparation.) Neurology wants me back on chemo, but as I said in a prior blog, I plan on suggesting other treatment options first. The various treatments I could undergo, would all require days to weeks off of work. At the moment I require insane amounts of sleep, and I suspect treatment would just increase the amount of sleep I’d need, at least around treatment days.

It has been really hard, and then I got word that my divorce settlement went from something I was okay with, to something that would prevent me from being able to pay even basic bills. To say I was crushed is an understatement. I love the city and state that I live in, and facing the possibility of having to move because I cannot work, is heart breaking. I’ve looked into low income housing but the wait lists are 3-5 years. It’ll take about 3 years when all is said and done, to get approved for disability. What are those of us who are unable to work, supposed to do?

Those with chronic illnesses are more likely to face unemployment or underemployment, than others. When you have multiple doctors stating that a person cannot work, and you repeatedly deny based on age and education level, it’s mind boggling. (Those were the reasons I was given for my second denial.) I look at my degrees, gathering dust, and I’m heartbroken. Recently I had to swap from a laboratory focus, to an investigative focus with my Master’s degree, because I could not make it into school, nor could I safely manipulate the laboratory equipment. When you’ve spent decades deciding on a career, falling in love with the career path, and pushing yourself to achieve school goals despite many moves, it’s disorienting to lose it all.

I will be able to work, eventually, but it could be a while before I’m capable of working full-time, unless I can find something that allows me to work from home. Doctors have stated that I may only ever be able to work part-time, and that’s if we get the disease under control. I want to work, and I need to work, but my body just can’t handle it. Financially I’ve stopped opening bills, because I know I can’t pay them. I’ve even contemplated switching banks because of the amount I owe on my credit card. The monthly minimum payment is making me unable to afford food.

This is not unique to me. Most people I know with a chronic illness that impacts their neurological or gastrointestinal health, struggle to maintain meaningful employment. If they do work, it’s at the expense of their health, and that obviously isn’t ideal. I’ve witnessed members of my family, who really shouldn’t be working the hours they’re working, continue to push their bodies to the breaking point. As my divorce slowly works towards resolution, I have to face things like insurance. How will I afford my medications? I need insurance that covers them. Of course I’ll need to buy insurance…

My goal is to find a work-from-home job that is legitimate, and support myself, but it will take time. The issue is that it’s time I may not have. I find out Tuesday what the treatment plan will be for me, and I’m hoping that it’s something effective, but not debilitating. I keep telling myself that plasmapheresis could be the answer, because it’s important to stay hopeful. Perhaps it will work, and I’ll be able to work part-time, scheduling work around my plasmapheresis appointments. Maybe I’ll find work that I can do from my own home. Whatever the case may be, being chronically ill definitely creates a large amount of stress around the issue of financial security. The disability system is definitely broken.