Job Worries

[jillian93]

Hello all,

I have CVID and I have a question... Next year I'll be graduating from college with a Bachelor's degree in English, concentration in creative writing. I was never planning on working for a large corporation, a place where you don't know the names of all your coworkers. I was actually quite excited to possibly work for a small publishing house. However, I recently heard a story that is causing me to be quite concerned.

A friend's husband worked for a company/business that was continually trying to fire him due to his medical expenses (I don't know his exact diagnosis). EVERYONE here knows how expensive medication for subQ is, especially when you do it weekly, like I do. But, has anyone encountered this issue? Have you been fired from a company because of your medical costs? Did you know someone who was? Or did you find it was difficult to become employed by smaller companies once your medical issues were discovered?

I'm just worried and quite honestly, annoyed. CVID has already affected so many areas of my life, and I'm saddened to think that my future career will be yet another. 

[syd]

Hello,

I understand your worries. What country do you live in?

I've only worked in the UK and Spain and everything is paid for by the public health service so employers don't worry about that. What I always worried about was that an employer would turn me down for a job because of the time I had to take off to get my infusion and them possibly thinking I'd constantly be off sick. So I never knew if I should tell an employer in the interview or not. Well in the UK you kind of have to declare it.

I'm sorry to hear about your worries and yes, for me the worst thing about this illness is not the symptoms or getting the treatments, it's the restrictions it places on your life.

Syd

[jillian93]

Hi Syd,

I live in the U.S., more specifically in Ohio.

I wasn't aware that the health system worked in that way in the UK. I'm sorry that you have to somewhat, "declare," your illness when you go into a new job. For me, I always feel somewhat exposed when telling people about my CVID. Maybe it's just me, but I imagine the hundreds of things my coworkers are thinking- I'm lazy, I call off a lot, I'll get them sick, etc. It's really frustrating because prior to the extreme fatigue in the year or so leading up to my diagnosis, I was a really good worker- I loved it, actually. But now I know that some of the stereotypes my coworkers associate with my disease are relatively accurate.

Do you feel like you have to job jump a lot because of your PID? Does it in fact upset your employers when you have to take time off for your infusions? I've had to deal with this somewhat so far, but part-time is quite a bit different than full-time, as I'm sure you're aware.

I appreciate the post and the feedback, Syd!

Jillian

[syd]

Yes it's probably my favourite thing about my country! Free healthcare for everyone!

I've only had one or two problems at work because of my CVID. The first was when the hospital was running real late and it meant I arrived a bit late. And the second was when my boss forgot I had my treatment and didnt book cover and then tried to blame it on me! Email evidence sorted that one out. But in general, as I'm a teacher and I have only been working afternoons and evenings, the treatments never normally get in the way because they are in the morning normally.

Well with treatment the fatigue should go away no? I had serious fatigue pre-diagnosis and pre-treatment. My family thought I was lazy! it went away though.

I've job jumped a lot but only because of my desire to travel. In the UK, my disease wouldn't cause me any problems in the work place I don't think but saying that, I don't really seem to have any symptoms anymore. I just need infusions and I'm perfectly normal (touch wood).

I don't know how I'd survive in the US, it seems really hard for anyone who has medical problems. Marry a European and come live over here, many countries have universal free healthcare in Europe!

[jillian93]

Thank you for the advice and the feedback! And sadly no, the treatments have not taken care of my fatigue. I met with a new immunologist this past week, someone incredibly experienced, and he said it's just pretty much something I will have to deal with

I would never be opposed to coming to Europe, so thanks for the very welcome nudge in that direction.