I had actually wanted to blog about this for ages, but never got around to it, because it’s a complicated matter and it’s not easy to come up with the right terms in English, because the German system seems to differ from the one in US and UK and it also is dealt with so differently all over the world (according to wikipedia at least *g*). I would have had to include part of this in another post I had planned (and already have almost finished writing) and this part got longer and longer and would have totally distracted from the original topic of said post. So I decided to write two different posts and start with this one, which like I said, I had planned to write someday anyway.
Last year, after I had come to terms with the fact that my MS isn’t as easy going and easy to deal with as I had thought for over a decade, I finally applied for and was granted “disabled status” within the German Social Security System. With MS I would have been eligible for all kinds of disability benefits and special protection within the work place from the moment the diagnosis was confirmed 12 years ago, but I hesitated to actually take that step for two reasons.
For one: I was not and did not feel (physically) disabled in any way. Yes, I have a chronic illness, but for a long time I thought it would be a fraud if I’d call myself “disabled”. Over the years I saw all the more severe MS cases and how hard the disease had already hit those patients and I thought I’m doing fine and I thought that I don’t need those benefits and I don’t need the kind of protection the disabled status provides in the long run. I thought: I can take care of myself.
That attitude changed last year, when I had to learn and accept that my MS had already caused more havoc in my brain and that the “I’m doing fine” state could change rapidly even with the new treatment. These few months when my mind temporarily went to rather dark places really turned a switch in regards to the question “disabled or not”. I might not be (physically and visibly) disabled (yet), but I surely am handicapped through this disease. I’m not just talking about the required medical care including regular doctors visits and meds I have to co-pay (even if it’s just a tiny amount compared to what I’d have to pay in the US for instance), but also about the fact that my risk of someday being unable to work and pay my own living is significantly higher than that of any other ordinary healthy person my age. This actually really only hit me last year when I had to come to terms with this progressing state of my MS. And then for the first time I started considering to make good use of all the benefits and protection I could get and for the first time I actually felt like I also deserved to get, because life just has dealt me a crappy hand in that regard.
The second reason to not apply for it right after getting the diagnosis was, that I graduated university a year later and I had no clear idea where I would want to work, but I was pretty sure that a certified disability would make it impossible to find and keep a good job. And I was confident that no one would have to know about the MS anyway and that I wouldn’t have to take sick leave more often than anybody else. But over the last 10 years I did have to take sick leave for my MS more or less regularly and all the people I work with know that I have MS and understand that it sometimes can be necessary to stay home for a few days.
With that experience I now know that in any new job I would have a difficult time to keep the MS a secret, even though I don’t “look like an MS patient” (whatever that actually means. But I have heard that a few times in my long history of this disease). The MS might not and does not limit my capacity to do my job, but I do need to schedule regular doctor’s visits and I need a half day off for an I.V. every 4 weeks and I might have to miss work for a few days if I experience a relapse. I could lie and come up with other excuses for all that but that would just really bother me and make me anxious and that’s something I really don’t need on top of all stress the MS is putting me through anyway.
So last year I realized that any new job I would search for or any new job that I would accept would have to be in a work environment in which I can more or less be honest about the wonky state of my health. I also knew that the jobs I’m aiming for with the 2nd degree I’m working on at the moment will most likely be found in the public service, administration or NGO field of work. Those places tend to be a bit more accessible for people with disabilities than the private sector is (I’ll include more information about all that in a second post later today or tomorrow). I’m pretty sure that with the history of my health and the way it does affect my every day life I wouldn’t have a shot in the corporate world in the long run. Plus, I don’t think the corporate world can offer me my “dream job” of being some kind of environmental lobbyist (in the broadest sense of the word) anyway :-)
And with this question “will it noticeably reduce my chances of finding a new and better job” answered with a solid “No, most probably not”, there was no reason to not apply for “disabled status” and that’s what I did last summer. So, since July 2011 I’m officially classified “disabled” and by law eligible for various benefits (like one additional week of vacation) and most importantly a decent tax exemption on my income tax. Which resulted in a refund of about 1150 EUR ($1500) this year compared to the refund of 400 EUR ($550) I only got back in previous years. Yay! It definitely makes up for the amount of money this disease had already cost me, not to mention the heartache, worry, anger, fearful nights and dark times I had to live through because of it.
Liljan, thank you for sharing this. I hope this ability to use your disability when in need helps you be more at peace and less worried when it comes to MS issues. I’ve only seen MS from an outsiders view point and it does not seem fair or right. I hope you continue to be able to manage it as much as possible.
I agree health care systems world wide are so very different. I am very thankful to have the Finnish health care benefits over the US (lack of) health care benefits. The US is insanely more expensive when it comes to health care, medications and even just the basic services one needs.
*Hugs* I know this is all really awful for you to have to deal with, but I’m seriously impressed with the way you’ve handled it. :)