Sara 32 - LumenaConecto

Interview Sara 32

Work training with a focus on employment.

Sara worked as a primary school teacher but had to leave her job because she is affected by Meniere's disease. She then became unemployed and has struggled to explain to authorities what her needs are and what adaptations she requires.

Since enrolling in Lumena, she feels that she has been seen and heard and that it is personalised. She has also started job training at a remote volunteer agency.

Her dream is to work part-time remotely on administrative tasks.

Can you tell us a bit about yourself and what life was like before you joined Lumena?

I am a trained teacher, but didn't work as one for many years. I finished in 2016 and then got pregnant in 2017. So I was both a new teacher and a new mum and couldn't get it together. During the pandemic, I became ill with Meniere's disease, which makes you hear worse and have poor balance. You become sensitive to sound, which is of course very difficult when you are a teacher. I was then on part-time sick leave to try to both adapt and relate to new sensitivities. It was very difficult, I started to get panic attacks and then I collapsed in 2020-2021, which led to severe exhaustion.

Then it's just been like that, I tried to get back to work. It didn't work out that way since 2022-I've been on sick leave and unemployed.

What contact did you have with the healthcare system at the time?

It was the health centre but I was referred to the stress clinic and it was great. You learnt how to behave and how to adapt your life to yourself and not the other way round. I've held on to a lot of that but I realise it's very difficult to do that.

Depending on the expectations of the environment and in contact with authorities?

Exactly, I've been struggling for a very long time now to explain what I need and it clashes with the Social Insurance Agency and the Public Employment Service. It doesn't quite add up, so I've fallen between the cracks, so to speak.

I have been struggling for a very long time now to explain what I need and it clashes with the Social Insurance Agency and the Employment Service.

Have you received compound aid?

I have received complex support, but have been bounced around. I went through something called introduction to work after I became unemployed. The idea was that they wanted to see what work ability I have. I encountered the first obstacle right when I started, it was the distance. I live in Sollentuna municipality and I was going to start work training in Upplands Väsby. It was an hour and a half's journey for me, which I told the Employment Service was too far, that I couldn't manage it, but was told that ”That's what's available, you'll have to go anyway”.

I have received complex support, but have been bounced around.

I take it that you were not given the right conditions?

No, exactly, but I didn't get any response to that, but ”This is what there is” so I had to grit my teeth and just go for it. I had a counsellor who said that I only had to come in two days a week and then I would go to a lecture and then I would get some work experience or something similar. That lasted for a few months, then I got a new counsellor and she said ”No, you have to come in here five days a week so that we can see that you have ten hours of work capacity in you”. Then I said it's not possible but we went on, I started in May and in October we cancelled because it didn't work, I just crashed all the time as soon as I tried to increase.

Was there any dialogue between you and your caseworker on how to organise the work?

Yes, because the caseworker told me that she understood, that it was very long, and thought it was very sad that it turned out the way it did, but that she has a set of rules to follow. She said at the end that she didn't realise I had ten hours in me because I got sick so often. Then she said that she was closing the case and that it was better that the Public Employment Service and the Social Insurance Agency could help me in another way instead, given that it didn't work out. So we cancelled in October 2023. At the same time, because of how it had gone, I felt very bad. A lot of panic attacks, anxiety and I felt that I couldn't meet the expectations that were required of me to get better. I just got worse instead of getting better. So I ended up in psychiatry because I had very high anxiety.

I was referred there, but considering how long the waiting time is, I had to wait quite a long time. I had to start attending a CBT group for anxiety and it gave me a lot too. I already knew a lot of what I had learnt at the stress clinic, but the CBT group was very focused on anxiety, how I should behave and how I can function best. After that, I felt fantastic when I left there. Because I knew it would take a long time with the Employment Service, I interrupted my sick leave so that I could start getting help. That took time.

I have received great information through the project and my coach has been fantastic since our first meeting. I can easily call her after a day at work and tell her how the day has been.

So you interrupted your sick leave to get some kind of intervention?

Yes, I signed up for 25 per cent health insurance in January 2024 and was contacted in August and then enrolled in the project in October.

Before you were enrolled in Lumena, did you feel that you had a say in the actions that affected your life?

No, I felt in the beginning that I was being run over, there were rules that had to be followed and I had to adapt to them. And in the end I felt that ”This is not possible” so I started to argue against it, really saying that it's me who's going back to work, then we have to do it in a new way so that I can work. And it wasn't until the last meeting when I had a joint meeting with the Social Insurance Agency and the Public Employment Service that I felt I was being listened to.

What was the success factor in being listened to?

I had a very understanding caseworker at the Social Insurance Agency who supported me. She said ”But you know, you're the one who has to get back to the labour market. We'll back off and take it easy” and it was she who sent the referral to Lumena.

What happened to your life when you joined Lumena?

Lumena sent out an SMS to everyone who was interested. I had to come to an information meeting where they told me about what they can offer. They were quite clear that there were long waiting times and that they could not take in more participants for it to be good so it took a while.

I was very hesitant at first, because I had been in the Introduction to Work programme, which didn't work out, so I was like ”How is this going to work?” But when I met my supervisor in Lumena she was very open and said ”We do this for you, we adapt to you and what you need”.

I put all my cards on the table and thought it might not work, but here goes.

I told her I needed a remote job where I don't have to travel far, that I work well remotely and can work independently. She said we should look for internships but also said it was difficult to find remote work. So right now we're trying to find an internship where I can get out two days a week for two, three hours at a time. Mostly to see if I can get a job where I have to come into the office and work the rest from home. But it's also important to find alternative ways so I can get healthy.

I was very hesitant at first, because I had been in the Introduction to Work programme, which didn't work out, so I was like ”How is this going to work?” But when I met my supervisor in Lumena, she was very open and said that ”We do this for you, we adapt to you and what you need.

What were the alternative routes to find?

They said that I could possibly study at a distance. I said absolutely, but that I didn't know how many per cent I could do.

So what I've done is I've started volunteering remotely. It's also because I have a big gap in my CV. I felt like I wasn't getting any help and thought ”I have to do this myself”.

Just to be clear, do you feel that you have to do this even now that you are involved in the project?

Well, actually, when I was enrolled in Lumena, I met my supervisor and she asked me what I do during the day. I told her that I had started volunteering but only for two hours a week. And then she asked if I could ask if I could do more hours a week just to see what I can do.

Then I did, and today I volunteer six hours a week, doing administrative tasks remotely. So I have taken my own initiatives. Sometimes it's a lot to do and I don't feel like I can really do it, so I'm not sure if I'm really volunteering for six hours.

Do you feel that you have backup from your supervisor now? For example, have you received coordinated support in dealing with authorities?

No, but she has asked how things work in contact with the Social Insurance Agency and the health service. So she's asked if I need support, but I've said no because I feel I've got the support I need, I've got it under control. However, there have been problems with the Swedish Public Employment Service and right now I'm organising so that we can perhaps have a conversation with the Social Insurance Agency because something has happened. I've been discharged from the Public Employment Service and I mentioned it in passing to the woman who is the project manager for Lumena in Sollentuna and she said that I would be enrolled if we find a traineeship, then the Public Employment Service must be involved.

When the referral to the project was written, they mostly said ”Now you've got help, we'll discharge you”. I've talked to Försäkringskassan about whether that's really how it's supposed to be and the caseworker said it was. I feel that there is a miscommunication, there is no control over who should do what.

I might think that it's not my job to keep an eye on it, it should work smoothly anyway and it doesn't.

This just happened and something I learnt by chance. I spoke to my caseworker this week and we are going to meet and discuss what to do because right now it is a big question mark.

What does this do to your health?

It takes its toll. Before, I was pretty calm, pretty anxiety-free, but when everything starts rocking, you feel worse. It's like pulling the rug out from under your feet.

How are you dealing with the uncertainty now?

I have always asked and pushed which means that right now I am trying to leave it for now until I meet my caseworker in the project. I'm doing a lot of mindfulness work and really trying to disconnect from it.

What are your dreams and goals for the future?

I wish I could work remotely because it's the only way I can function and preferably with something administrative or similar. I don't know if I will have one hundred per cent in me now, I have been sick for so long so I have no idea.

I want to work with children who are struggling, I wanted to be a special needs teacher. So there is some idea of working in non-profit organisations for children sitting at home.

The jobs are there, it's just that I need to get healthy so that I can take those jobs.

I wish I could work remotely because it's the only way I can function and administrate or something like that.

Is your supervisor looking for such jobs for you?

We've looked first and foremost at places that have been close to me if I need to get there but it's very difficult. But people don't respond, they don't get back to us. She also said that internships within the municipality could be an option, but there we were also met by a wall. The municipality has a policy of not accepting trainees who are outside the labour market. Therefore, we should look in the private sector, which feels like that because I am a teacher.

I think that you are seen and that it is adapted to the individual and that it is very much the individual who controls.

Do you have any further feedback before we finish, what has been good and what has been less good?

I think that you are seen and that it is adapted to the individual and that it is very much the individual who controls. I don't get run over, but what we've said needs to be better structured. I've noticed that the supervisor is very stressed, there's a lot of running back and forth and they don't have time to keep up. For example, I've been forgotten a couple of times when we were supposed to have a conversation. It's difficult to establish continuous contact. We have discussed this and we have come to the conclusion that it should be more that you know that it is, for example, every two weeks and not sporadically.