Chronic Illness + Employment

6:00:00 PM

After my first couple of diagnoses, I was still able to attend school and work multiple jobs. It was only over the last year or two that my symptoms began getting worse.

I have always been a very independent person. I didn't ask for much and I only took what I worked for. I didn't like getting handouts even if it was from a family member. Now, everything is different.

I still don't like asking for help, but now I don't really have a choice. I am unable to work or go to school and that leaves me with way too much time on my hands. It also leaves me with a bank account with barely anything in it. Many people have told me, "at least you don't have to go to school/work." I still can't comprehend why they would say that though. I honestly wish I could work. I really wish I could finish school too. I may have hated it at the time, but I hate this more.

Many able people don't understand how hard it is for spoonies to get jobs, let alone keep them. When I find job opportunities, it's pretty easy to see that they don't work for me. There are a common list of job requirements that I've seen in most job descriptions. Sadly, I can't fulfill them.

When I turned 16 and began looking for employment, I thought some of those requirements were a joke. I didn't think about the fact that some people wouldn't be able to do the job. Now I'm one of them and I can't find work.

After doing a quick search on multiple job websites, I found that most jobs require the following:

1. Ability to lift and/or move 50 lbs

2. Ability to stand for long periods of time and work long hours.

3. Ability to show up for work on time

4. Ability to follow through with scheduled shifts

5. Reliable transportation

These requirements may sound easy to others, but they're not always easy for spoonies. I myself can barely lift 5 lb weights. Honestly, it's embarrassing. I used to be a varsity weightlifter and now I consider my laptop heavy. I know that employers can make adjustments for things like this, but I don't like getting special treatment. It may not be the same for other spoonies, that's just how it is for me.

I've also become a part-time stroller. After my right heart catheterization, I decided that I wanted to try out a wheelchair. Even though it made me feel more independent, I knew that it would interfere with any possible work. I wouldn't be able to stand for long periods of time or do a majority of what others would be able to do. Now that I think about it, I can't remember one place that I've seen someone like me working.

Number three and four might sound silly, but many spoonies struggle with them. It doesn't matter how early I set my alarm for my meetings or appointments, I will never get there on time. Whether its because I almost passed out in the shower or because I can barely walk to my car, I am destined to be late. It's just something that I've had to accept.

I've also had to come to terms with the fact that I cannot guarantee to follow through with any plans I make. There is always the chance that I will have to cancel. I can feel completely ok one day and then feel like a train wreck the next. Sometimes I can feel amazing in the morning and I can't get off the couch by the afternoon. Knowing that, I can see why employers wouldn't want to hire me. I sound like a flake.

Transportation can also be an issue for spoonies. Honestly, I'm pretty sure I shouldn't be driving, but I do it anyways. My optometrist said I definitely shouldn't without my glasses. I also struggle with my joints locking. Luckily though, it hasn't ever happened when I've been driving. I know I'm not the only one either. Some spoonies can't drive for themselves, which means they have to rely on others to give them rides. It's hard to guarantee reliable transportation, when those people also have jobs of their own.

I'm not saying that spoonies can't get jobs, but I do want to emphasize that it is difficult. I honestly never thought I would be in this position, but I am. I can no longer work retail or food,  I can't photograph sessions, and I definitely can't babysit anymore. It killed me when I had to quit my day care job, but I know realistically I shouldn't be responsible for anyone else's life when I can't even figure out my own. I would never be able to forgive myself if something happened to me when I was with a child and something then happened to them. I am a fall risk and that doesn't go well with child care.

Having a chronic illness is hard in itself, but accepting how it affects our daily lives is even harder. I'm hoping that one day I'll feel good enough to work again, but for now I'll try to enjoy the free time I have. I've been trying to use it more productively with this blog and my novel, but I often have to take breaks. It's also nice that I'm able to use this time to read and relax with the kittens. I'm thankful for this time, but I do wish that I could begin working again.

Have you struggled with work and a chronic illness? I'd love to hear about your experience!

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  1. I'm so sorry that you have had to quit your jobs. Especially the ones that made you so happy. I am glad that you have the opportunity to "work" with this blog! It is amazing and you are doing a great job! I have never had to quit a job due to my migraines, but, they have made many jobs very hard. I went to nursing school, but have realized that it is just not a career that goes well with chronic head pain. You can't save work until tomorrow as a nurse, so in a small way, I understand. Keep up the great work here, I enjoy your posts!

    1. Thank you for your kind words :)I'm also glad that the opportunity has come that I am able to blog and write again! I have always loved it. I completely understand your pain! They're not as frequent any more, but I dealt with migraines for quite awhile. My current rheumatologist actually prescribed something for me, but I haven't taken it. I hope you've found something that works well for you! I pray that your migraines disappear, or at least get easier!

  2. I am so glad to read this post. I'm not pleased that you had to go through it, but at least someone can understand what I am going through. I used to be very high functioning, studying and then working, whilst being fit and active and social. Then the exercise dropped away because I couldn't stand/walk, then the friends dropped away as I had difficulty going out. Now I am worried that I can no longer do my job. I tried to go to Uni, but couldn't whilst I was working. I feel stuck, and have no idea what to do. At least I know I'm no alone

    1. Hi Megan! I'm glad that you were able to relate to my post, you are definitely not alone! Having to give things up is definitely not easy, no matter the reason behind it. I still struggle with quitting school and work, but I know it's what I needed to do. Of course, I hope you're able to keep your job, don't be too hard on yourself if you can't. Just remember, you might be hurting yourself in the long run if you keep working a job that your body can't handle. I hope that you're able to come to an easy decision and your body gives you a couple days pain free 💕

  3. Hello! I loved this blog post, I can relate to almost every part. I'm not very weak and can still lift and stand for the majority of my shifts, but I have PCOS and Endometriosis and when I flare up, it's extremely difficult to work. I work 2 retail jobs that total 40 hours a week and it's killing me. I had to miss 3 days of work this week because of flare ups, and I'm scared that I'm going to get fired.
    I turn 21 in January 2017, my doctor doesn't have any more advice except for hormone injects (which I will never do), and I'm struggling to make a living and afford this life.
    I wish the best of luck to all of us who are chronically ill! We have to work together to help each other out. Thanks for the post and keep your chin up!
    If anyone has any advice for me, I'm open ears.

    1. Hi Chloe!

      I'm so glad that you loved this blog post! Knowing that other people can relate to my pieces is exactly why I write them! It's not always easy, but I know how much it helped me knowing that there were other people going through the same things that I was/am.

      I have a friend that also struggles with your conditions, so I have an idea of how hard working must be with them. Hopefully you're able to find something that both makes you happy and can be flexible during the times when you flare up, while still paying the bills!

      I'm so sorry to hear that your doctors don't have anymore ideas. Have you tried getting a second opinion? I know I've seen countless specialists and I'm still not on the best treatment plan, so I ask lots of questions and always get a second opinion!

      I hope you had a happy holiday season and have a good birthday next month!