career college high school university working with lupus

Full Time Job/School + Lupus – Can it be Done?

Ah yes, the question that has plagued mankind for many centuries. The question isn’t only CAN it be done, but SHOULD it be done?

I was first diagnosed with Lupus 2 months into my first year of high school. Sure, I spent a good amount of time out of school and in the hospital. I’ve always been a pretty good student and I usually get good marks. I must say, however, one thing I do NOT like is having the spotlight on me. When I’m in a classroom, I like to put my hand up to answer a question when I feel comfortable doing so. I don’t like being singled out, nor do I like one-on-ones. Well, while I was in the hospital, there was this tutor who would always come in. She would always come in when I was at my weakest, and I’ll never forget those fingers of her. She had the thickest fingers….they reminded me of sausage links.

But I digress. As soon as I was released from Sick Children’s hospital, I was both happy and eager to get back to school, and I did so on a full time basis. I did school full time and also did dialysis 3 times a week…until I was lucky enough to get well and not need dialysis again for about 7 years. All through high school, I never skimped on my courses. I took all my courses and never failed one. I was (and am) the type of person who didn’t like getting special consideration or “allowances” from my teachers, so I always tried to do everything that everyone else was doing without and extentions or special consideration. I remember one day I had an exam. I was so crippled with a stomach ache that I could barely stand up straight. My dad told me to stay home and he would talk to the school….but I refused. I had my dad drive me to school and I took the 2 hour exam while my dad stayed in his car outside waiting for me to finish. I finished. I also got 82% on that exam.

I didn’t participate in too many extra-cirricular things as I didn’t want to overdo it. But I was actively involved in my school band. I had to be….I loved music, and my high school was known for its band. I played the clarinet. I was the concert mistress for the band both when I was in the junior band and also when I was in the senior band. I did all of this throughout high school while holding a part time job for 2 years as a cashier in a fancy grocery store, and also moving on to be a telephone technical support agent for an internet company.

When I graduated from high school, I went on to college full time and took one of the most physically exhausting courses out there…especially for a person with Lupus: Chef Training.

This 1 year intensive course really tested my willpower. Standing on your feet for hours at a time while wearing a hot chef jacket and checkered pants while slaving over a hot stove and a hot oven isn’t easy for anyone, nevermind someone with Lupus! But I did it. I graduated, and it was one of the best years of my life. I made some lifelong friendships…and I’m happy about that.

I worked as a cook in a restaurant for a few years. After about a year of working in the restaurant, I had a Lupus flare and had to take some time off. I remember being off for less than a week when my kitchen manager called my house to see if I was ready to come back to work yet. In the restaurant business, there is often a very high turnover rate, and even though this restaurant had only been around for a couple of years (I started working there the day it first opened), I was one of the people who had been there the longest. My kitchen manger Ian had no idea what I was going through. This was my fault partially because I didn’t tell him. But when I told him I wasn’t ready to come back to work, he’d leave me alone….for about 2 days!

I remember once he called me and asked me to come in to work. I totally was NOT ready to come back to work, but I could sense the desperation in his voice. I couldn’t let him down, so I told him I’d come in for 4 hours ONLY. When I got there, I felt like I was moving slower than a turtle. But I managed to get all of my orders out on time. As soon as 3 hours and 59 minutes passed, I started to wash up and get ready to leave. My manager tried to guilt me into staying longer (I was usually stuck there for at LEAST 10 hours) but I refused.

I quit working there. I knew that it was way too much for my body….and I could never keep this up for the rest of my career.

After leaving there, I dabbled in going back to school and getting a job in nutrition. Around that time, I was lucky enough to score a part time job working for a major bank in their card products department. I spoke to a few of my friends, one of them who had taken nutrition, and she told me that there was a lot of competition in that field, and she had subsequently switched to accounting. I decided that I was going to go into HR. I like talking to people, it would allow me to move up in the company that I now worked for, and my company would pay for my school! Does it get much better than that?

……before I started my first day back at University, I got sick…and back on dialysis I went.

I feel like early on when I was first diagnosed, I had the energy to do ANYTHING. I look forward to slowly but surely finishing university and hopefully getting a job in HR. But let’s face it: most HR jobs are full time jobs. I don’t even know if I can get up every single day and go to work. Aside from that, eventually I’m going to have to leave the nest that is my parent’s house and get a place of my own someday. Perhaps I’ll get married someday, but until then, I have to figure out how I’m going to support myself. I don’t know if I can successfully support myself and live the life that I want to live if I only work part-time. If I could find a job in HR that would allow me to work in the office and also work from home sometimes….wow that would be absolutely perfect.

All of this being said, is it even a good idea for people with Lupus to work full time? Lupus is called the disease with 1000 faces. Even though there is an estimated 15 000 to 50 000 people in Canada who have Lupus, the thing with Lupus is the fact that no two people experience the EXACT same symptoms. That being said….everyone is different. Some people might be able to hack it without any problems. I did pretty well when I was in high school, and I managed to graduate when I was supposed to without having to take any extra courses or summer school to catch up. It all depends on the individual. I aspire to be able to work a full-time job in HR, and hopefully the bank I work for will allow me to work from home and from the office. My employer has been the most understanding employer I’ve ever had where my Lupus is concerned, so I dont foresee that being a problem. Of course, if I have to interview a potential candidate, I don’t expect to work from home. But if it’s normal other computer duties I have to perform…then why not?

Whenever I look at the job postings for the company I work for, I notice that at the bottom of the page, they state that they are an “equal opportunity employer. It is the Company’s policy to recruit and select applicants for employment solely on the basis of their qualifications, with emphasis on selecting the best-qualified person for the job. They do not discriminate against applicants based on race, color, religion, sex, national origin, or disability or any other status or condition protected by applicable federal, state or local law. ” I think that if a company says that, then they are willing to accomodate their employees when need be.

Something I’ll never forget is the fact that I have to listen to my body. I’ve always been the type of person who wants to please everyone all the time. As the years have passed, I’ve learned to mellow out sometimes. I’ve also learned to say “no” sometimes. If I were the person then that I am today, while I really loved my kitchen manager Ian, I’d have told him to fly a kite if he continuously asked me to come into work.

I guess my advice is too listen to your body first. And don’t forget to check out the company your applying for’s policy on those with disabilities…both visible AND invisible! 😉


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