Story

I met my partner almost 10 years ago. It was a special meeting. Right away I knew I had met someone special and stopped dating others after the first time I met her. The special feature in our relationship wasn’t that everything was perfect, far from it, we both had strong wills and strong opinions. But in the end, we always could talk it out and always meet halfway in a respectful way. We made a trip to Rome together early in our relationship and that trip was perfect. We both very much enjoyed each other’s company, had similar goals on what we wanted to experience while there.

Before I tell you about my girlfriends sickness I want to spotlight that despite her sickness she supported me in a way, making me a much better and healthier person. I had been to the doctors a lot through my life, something in general is not right, but it was hard to find the right words because I didn’t know what was wrong. I was often dismissed that nothing was wrong. It was just because my overweight. However, she encouraged me too keep fighting.

She made me seek a 2^nd time for my snoring where I the first time was dismissed as not so bad. The procedure is that you get different things with you home, attached to your body, and sleep one night. I tried to say that I didn’t sleep all night and they just said that they got 2h of recorded sleep were nothing was wrong.
The difference the 2^nd time was my partners support and that I had medicine to actually sleep. After the test the doctor was almost pale and apologetic and said I needed a CPAP(Continuous positive airway pressure) machine immediately. I was one of the worst cases she had seen.
Just this improved my health enormously. I had energy I never thought I could have. With my partner’s support I was on a journey where I realized I had EDS and what treatment I could and needed to get. I was diagnosed with ADHD got medicine but also a new view on my life and understanding myself better.
My mom always said I was a fighter and I never understood why. I was always perceived and thought about myself as just a lazy person that just couldn’t get things done. But she saw that I was fighting something and didn’t give up. I was kind of taken away that my partner, without even having met my mother before this, said the same thing.
Without my partner I would just keep believing I was a looser, but she opened my eyes and helped me identify what I was fighting without knowing it.
With her support I had the courage to take a leap into a field of work that I had no experience in, and it was the best decision of my life. I love my current job and my current employer is great and the colleagues are all just so warm people.
It is thanks to this change that we have been kept afloat because the field, programming, had much better salary opportunities.

I can’t express how much I love my partner. Loving her for her, who she is. Her smile, laughs, humor or just sending time with her. Talking long and nonstop about anything and just be together. Doing basic things like cooking or cleaning together. I never grow tired being with my partner. But also, a deep love that has grown through the years with her support despite that she barely has had energy to manage herself. Helping me identify and finding the right words for medical issues I have had but not knowing how to express to the doctor.
Today I have found, and is surrounded by, an incredible net of doctors, physical therapists and different kind of treatments for my various difficulties I have to struggle with my whole life but is constantly improving my life quality as a whole.

So this is about my partners sickness but I wanted to give some background on the very good parts of our lives.
Right before we had our 2 years anniversary my partner hit the wall. Exhaustion. My partner is not a lazy person or someone who just gives up that easily. She is of the mindset that a person needs to work, she wasn’t person who just is lazy on the couch, still isn’t, she wants to contribute to society and to us. She has to work, everyone does. So she fought to get back to work, pushing herself, so she was back within 7 months when the doctors recommended initially to take it a little bit slower. But she didn’t want to be stapled as a leacher because she wasn’t.

It lasted about 5 months and one day she collapsed and collapsed bad. The first month she couldn’t get up and slept for about 23 hours straight using that hour to do basic needs when her body screamed for food or she just had to go to the bathroom. I saw that this wasn’t voluntary. I wasn’t like she turned her back on me and didn’t want to get up when I tried to wake her, she could barely talk or was barley responsive at all when it was the worst. She almost fell walking not because she was weak, but her head literally didn’t activate. When I managed to wake her up, she was always crushed that so much time had passed and tried to push herself to just do something but most of the time she almost fainted.
This was like “the dark ages” for us. A time our minds shuts down and try to forget because it was a very heavy and depressing time. This was before I changed my line of work and before I had found out all I know today so I was not feeling too well at work, disliked it even, and had a stressful private life to somehow support my partner.
After a few months she got ever slightly so better and had checkups with the doctor. This time she agreed to follow the doctors plan and suggestions more than last time. She needed more time unfortunately because she crashed so hard.
It was thought of going through it once more. We had already had a year almost last time and I had gotten my partner back, mentally, to start over again. But this time with a 2 year horizon. Or so I thought then. But I could manage. I knew then I had found someone special. But I am not going to lie. We were new and a part of me did think about leaving her but the basic humanity in me just felt that I could not leave her in such a state, not able to do things, and I knew that this great person was behind this tiered mind. So, I fought through it.

My partner started all sorts of journeys to different stately instances that gave help in different ways.  At this point my partner is on sick leave from work and focus was long term to get back to work. In the middle of all things that happened she were suggested to do a neuropsychological test, checking if she had autism or adhd.

It turned out on the initial screening that she had strong indicators for autism. But in our country the local care center she went to didn’t have authority to set a diagnosis on her. So, she was sent to another specialized instance for this with a waiting list. Not only was the waiting list long but the doctors recommended decreasing the other instances until a diagnosis was set because it was a bad idea to do some things that might not help if she needed more specialized help.
This… this was hard and trying times for us both. My partner was far from work capable at that time but to decrease help and progress in my eyes was not great. Last time my partner didn’t listen to the doctors it went sideways so she wanted to follow their advice. It took about 1.5 year to set a diagnosis because the long waiting time and far in between meetings along side less activity during the summer due to vacations and so on. Se after 3 to 3.5 years in she gets diagnosed with high functioning autism with adhd and get medication for adhd.
One issue before she got the diagnosis was that her employer got a new boss and this boss wanted to buy her out because they had exhausted, in their eyes, every possibility to get her back to work. From the employer’s point of view, I get this. She has been away for almost a total of 4-5 years. But they had far from exhausted every possibility in my opinion and we were waiting on the next step after the diagnosis so it wasn’t like she weren’t fighting to get back to work. The employer didn’t know about the diagnosis, and we didn’t tell, I wrote it here, so it was only about the sick leave for them. We have strong work unions and rights in our country so she could not be laid off, or bought out, just like that and especially if she got her diagnosis her employer would be obligated to meet special needs. BUT my partner had no energy to fight it. She was so sick still and her old work place did bring a lot of negative energy due to her getting sick there so she signed the papers.
We still got some money through the healthcare system if my partner followed the plan to get back to work in general now. Which she did and still does.
I was angry with the company forcing her in a way to be bought out and angry at the situation that I could not do more. My partner didn’t have the energy to fight this even with my help.
Even though she had gotten better through these almost 3 years, soon to be diagnosed, her cognitive abilities were gravely lower. She could not take in information in the same way. Her head shut of easily like she almost literally fainted if she forced herself to read something she had read but could not grasp.

A common thought from people hearing this story is that she might just be faking so that she got out of work and lived off me. But standing next to her all these years, it was too severe to fake this, her sincerity both in thankfulness but also shame that I have kept us afloat, and she has just felt like a burden, but I stood my ground beside her, speaks volumes about how sick she has been. A person could not fake how ill she was because she never stopped trying to get better. Never. It was scary to see her shutting off against her will. She has never ever done these sinister things that you hear in stories about when a person is manipulating another person just to get someone’s money. On the contrary, she has taken steps to make sure what mine is mine is mine, and hers is hers, because she felt like such a burden and great shame that she didn’t manage things she felt she really should manage. She didn’t want me to feel used if things didn’t work out, not that I planned to, that insecurity only was at the beginning in the very worst period, but she didn’t want to take risks. She understood that things could just change one day, life is random like that, so we both should protect our own interests. I was so sure about our relationship honestly, I was ready to merge our economy, but she wasn’t.

So, at 3.5 years she was bought out from her employment and had autism and adhd diagnoses. The positive thing about this was that she got medicine for adhd which made miracles with her. She got her spirits up. She started to return mentally. It was lovely to see.
We were, however, in a hard spot. She had no work to return to, wasn’t really ready yet, so now she was getting recommended to instances more specialized care for her diagnoses. Only that… they had such a long waiting list.

Before she got sick the first time we had moved together to a bigger apartment. We could afford it at the time. When she got sick and had a substantial lower amount of money, we barely afforded it. We needed to rent out a room to get by decent and I needed to have 0 sick leave from work otherwise we didn’t even out the economy and had to take some from our savings.
It was also around this time I changed careers, putting me long term on a better road. So even if she was so sick she was always supportive of me and wanted me to have a happy life and a job I liked and gave me strength and courage, despite our very fragile economic situation and this job has helped us keep us afloat.
We also moved to a smaller place, 3 years ago from today, because we didn’t manage to find people who wanted to rent a room, we could not afford the apartment, so it was too risky, to stay.
The smaller apartment was smaller, but also cheaper, much quieter and close to the forest. These things helped my partner feel much better being so close to nature and able to feel silence at home. In our last apartment we heard much through the walls.

We moved to the apartment about 1 or 1.5 year after her diagnosis, much thanks to her having the energy to do things after the adhd medicine. Sure, she needs to get back to work but she also understood we could not afford to live as we did and since I worked, she put the effort into finding a place and consulting with me when she did.
During these years, and the next in the new apartment, she was on the waiting lists for these different instances recommended after she got her diagnoses. Some came faster than others. Some proved fruitful and some were out of place. Her doctors at our local care center didn’t have full insight into what these different instances actually did. Only those instances had. They just had basic information in broad terms and it became like a trial and error situation which almost drove me insane. Not because my partner didn’t do anything but that the information was so sparce that even her doctor could not really know if they worked. I mean being on a waiting list for 6 months just to realize they can’t adapt to autistic spectrum was maddening. And it isn’t like my partner has not tried. She actually found treatments, privately, that have turned out to work but she needed to fund them herself. None of our parents are wealthy so while they were there for us, they could not do much. But this treatment her parents actually paid for, and we are so grateful. It has improved her health massively and today this has helped her on a path where she is on her way back into life at work. The instances leading to a job is governmental but with a shorter waiting list with a training program where you can start to work there when you are healthy enough. Everyone that works there is through this program. The pay would not be great but it will be better than we have, and it is a start to a new life back on the market.

In total we are at the brink of 8 years of my partner being sick with a hopeful ending. During these years our economy has been strained, a lot, it has been tough. We are 35 today with no economical future. Even with her new job we the difference in income might be that we would be able to put away 100$ a month. Since we both have adhd and other illnesses our medical costs are very high and without them we are not able to save put away any money as it is today. We are just getting by. I am working on getting promotions but that is years in the future. My partner is working at getting back in to the job market but it cannot be rushed and will have a tough start.

We barely have any savings or any economical security in our lives. And this is why I am here. We dream of getting married and having a wedding. I am not speaking something grandeur, just something small with our closets family and loved ones. We are dreaming of being able to buy a house some time in the future.
And to be honest, with all my illnesses, have some kind of economic security for my elderly life. It is undeniable that it will be a painful life with my EDS and I have this fear of not being able to work as long as expected, not that I want to quit working early but that I will not be capable to do so and that we would end up in poverty as elders.

My partner has given me so much support and love, and I have given some of it back with my support. But I want to be able to give her more. I would love to be able to give, with people’s help here, us both a better and brighter future. Hope for what is ahead of us.