No one choses to get an illness; you don’t chose getting diseases in your lungs, in your kidneys, in your heart or elsewhere in your body. No one choses to get cancer, a stroke and I most definitively not chose to get PPMS! Above getting a life changing disease you may also be faced with the fact that the disease may also make it difficult to work. In my case – I’m not able to do my work at all. How on earth am I going to earn money now?! You know, you need money to put food on your family table, clothes on their body and pay for the place you live in… Your not only blessed with a disease you might also be blessed with an economic disaster.
Upcoming economic disaster or not
Maybe not an disaster for my family – but a change in ours “would like to”
I am lucky, because with some changes in the way my family spends the money my husband earns we will make it. But we won’t get that extra car we might need, because of my difficulties with walking. We will need to cut back on the “we would like to”. The fact that I’m cause to this, because I’m not working, is tough for me to handle. Now I’m not only causing my family more work at home also I’m causing an economic loss.
My plan was to work as “everybody else”; until it was time for retiring. Sure, since I had the job I had I knew that all people aren’t able to do that because they might get a disease or get into a severe accident. But still, I was going to work until me retirement. When I realized that my different symptoms didn’t plan to disappear I thought that “ok, I won’t be able to work full time before I retire” and when I finally got my diagnosis that same thought stayed.
Only able to work 5%, so goodbye to me
I’ve been aware of the fact that I might loose my job due to my symptoms and inabilities since the beginning of last summer. The fear of that has been in the back of my head like a silent thunder in the distance. As it comes closer to you the thunder gets louder and louder and in the beginning of December the thunderstorm was over me.
Me, my boss, the HR, my physiotherapist and a representative from my union finally had a meeting. The HR and my boss made it very clear that they would have no job to offer me as long as I’m only able to work 5% as I am right now. The Region (the “mainBoss” over hospitals and doctor stations ) do not offer job at that percentage.
When you’re not being able to work – The Swedish Social Insurance Agency
We have something called Swedish Social Insurance Agency that gives you money if i.g. your kids are sick so you need to stay home from work with them or if you get sick for more than two weeks. I’ve been getting a percentage from them every month but now the insurance agencys doctor has decided that he don’t think I’ll ever be able to work 25% again (their minimum demand of how much they want you to work. They have their fixed limits that they want, and lets, you to work 25, 50, or 75 % when you of some reason aren’t able to work your full time. When you haven’t been able to work for, I think, a year they do an assessment of the probability of you being able to work again. That is where I am right now. If my doctor agrees with the Insurance Agencys doctor (i.e. me not being able to work again) then they change the allowance that I get from them to a lower percentage.
Right now I’m getting about 75% of my salary. Since my employment is at 80% I get 75% of the salary I have when working 80%. Confusing? I’m too tired to try to explain it further. And if you don’t live in Sweden it doesn’t matter anyway.
It’s all about the doctors decisions right now
Right now I’m not noticed. My boss are waiting for the decision from the Social Insurance Agency before they do that. Theoretically that doctor may say that I’m able to work 25, 50, 75 or 100%. 50, 75 or 100% would then change nothing but if he says 25% my boss can argue that they don’t have a employment to offer me. Theoretically. I know the answer now. Since both my treating doctor and the doctor att the Social Insurance Agency don’t believe that I can work at least 25% I will be without a job.
And if they decides that I’m able to work 25%, but not more, I will “be sacked” from the employment I have. If they don’t have another employment on 25% to offer. That means that if my boss, the Region, finds that they can offer me an employment at 25% as e.g. as a doorman I’m gonna have to say yes to that. Otherwise I won’t get the allowance from the Social Insurance Agency.
Sweden is, despite all a fairly decent country to get sick in…
If you don’t have bad luck…
I know that Sweden has got a large amount of persons with different illnesses that has gotten so much troubles with the Swedish Social Insurance Agency and not getting what they should have gotten. And arguing with an Agency of this size is not what you have the strength to do while ill. I’ve been these frustrated and sad persons when I was their nurse, when I worked in the cancer ward. I was so angry and felt their despair on their behalf when they told me. I so understood their tears! They were sick, they didn’t get salary because they weren’t able to work. And then the Social Insurance Agency didn’t give them the money they were entitled to (we pay taxes that goes to this, amongst other services, every month). I’ve met single parents with this kind of problem. Who would feed their children? So, yes, I know. Sometimes Swedens social helping system doesn’t work as supposed.
So far so good – grateful for being in this country
I’m grateful for not having any problems, The Social Insurance have worked as it should so far. That I’m not able to work as much as 25% aren’t their doctors fault. I know that the Swedish welfare is so much better than most other countries. I GET money despite I’m not able to work. I don’t need to panic when I’m getting a new medicine that I have to pay and so on.
I know there would be a big difference if I didn’t have a parter that is able to work. If I hadn’t have him I would have a big struggle. Sure, there are fundings to get for e.g. your dwelling, but you need to have the strength to apply for this. And you need to know for what you can apply for fundings. But at least we have those in Sweden.
Finding ways to pay the bills
I focused on my situation in this post. I know it differs in so many ways for people in Sweden and in other countries. I’m getting money every month despite not working, while there are so many people in this world who needs to go to work despite their being ill. And they might not be able to afford any treatment. I’m aware of the fact that people will have to sell everything they own just to be able to get their medication. The struggles with paying bills or being able to be home from work because of illness is something that goes on everyday somewhere. In several places.
The purpose with this post
I guess I wanted to lift the fact that I am loosing my job because of my PPMS. The fact that I can be lucky that I get money, not much, but I do get some money despite the fact I’m not able to work. That the economic part of getting a chronic disease is a struggle for so many people in this world. I’d planned to write about the emotional part of not being able to work too. How this has made me feel. (Useless, worthless and so on). I might take that another time.
I really wish that I could have written something that could be useful for someone in this post. It turned out to just be some information about my working-situation right now. And a little bit about the fact that in Sweden we have a Social Insurance.
Please tell me what it looks like if you get a chronically illness takes away your ability to work! Do you have something similar to Swedens Social Insurance? Or maybe you live in Sweden and have a different experience or lifesituation than me?
Thanks for reading!
PS! SEO – I do not care wether or not I have internal links!!! If people finds me they do. If I have no use of putting links into my post I will.