I hate that it is coming to me writing this. I literally hate it.
In a country that has helped me with my health issues that would have caused me to go bankrupt in my own land, its hard to believe that the care that my wife needs, is SO hard to get. Many people feel that Sweden is this utopia land, where everything is great, and health care is wonderful. Even I thought so in the beginning of me moving here. The longer I live here the more disappointed I am. Not that I have any right to really complain, as it is still more affordable here than back home in the US, so I guess I should be thankful for what I have.
It’s hard though. It’s hard to be thankful for a system where there is supposedly #healthcareforall but it feels like in a lot of ways transpeople are excluded. I am not personally trans, but my wife is, and today I wanted to talk a little bit about how we are feeling, and what we are struggling with.
I am fed-up. Not with my wife. I am fed up with the way that the system works here, and the way that it is treating her like her problems are not WORTH getting help for. Sweden is ALL for equality, but the way that the trans / nonbinary community is treated by the health care system here is a fucking joke.
In ALL of Sweden they have 6. Yes. 6. places that you can do the evaluation needed to start treatment as a trans/nonbinary person. (Treatment being either hormones, or whatever other option that the patient and doctor deem appropriate)
I don’t know where to even begin to explain what is wrong with that. 6 centers in the whole country is just ridiculous. The evaluation itself takes anywhere between 4 months to a year, but from what I and my wife understand, most are on the higher side of that estimate. This means that by the time that you have gotten through ALL the waiting times to GET to the evaluation, and the evaluation itself it will have been a 3 year wait to get help.
With the suicide attempt rate while waiting for care being almost at 50% of transgender patients, I think that it is HIGH TIME that we here in Sweden start a revolution. We NEED to fight for better care for our transgender/nonbinary friends, and family! (Here is a great source that breaks down all the suicide rates of transgender people by demographic. There is not one where it dips below 16% and if you exclude the outliers, then the average is not dipping below the mid 40% range.)
It is NOT ACCEPTABLE to make them wait 3 years to get the help that they so desperately need to feel ok.
I sat down with my wife tonight to talk to her, and we both are on the verge of having mental breakdowns, because we are being pushed constantly towards self medicating as the only option. In Sweden, one of the countries that is usually portrayed as having a strong social system, and a great health care system, transgender and nonbinary people are being pushed to buy medications from around the world, in areas where the market is less regulated, in order to begin treating their gender dysphoria, while waiting for treatment. This is NOT safe. This is NOT a sustainable system!
More people may go bankrupt from medical costs (for things that are NORMALLY covered under the social insurance, but because they are not getting it prescribed they have to pay out of pocket), more people will die, and more people will treat themselves and not get the proper medical attention if this does not get changed!
Because of the feeling of overwhelm and helplessness, that feeling forced to self medicate causes, my wife and I had to have the VERY real and scary conversation of “Where do we go from here?” because I am aware that mentally the process of her self medicating will be too taxing on me, and I will have to leave our relationship for at least the time until she is being properly taken care of by a health care professional.
This would be the best solution for both of us IF she feels that she can not go on without self medicating, as I do not feel that I would be able to be the support needed during that time as the worry about all the “what ifs” that come when your partner or child is self medicating would be debilitating for me. I would not be able to function, which would mean that she would have to help take care of me. I do not see that as a fair solution, as I want her to feel good when she starts treatment! I want her to be happy!
This is NOT a conversation that we should be forced to have! This is not a conversation that parents should have to have with their children! Many may see me leaving if she begins self medicating as a selfish act, I would dare to say that it is the opposite. I would leave so that she would not have to try to take care of both myself, and her during her treatment, so that she could focus on allowing the medication to serve its purpose and help her feel better. I hope though that it NEVER comes to actually making this decision, as I would be devastated. I love my wife to the moon and back, and I never wanted it to even get to a time where we would have to have this conversation.
This is why I am writing. I am writing to start a revolution. I am writing so that EVERYONE can see what it is really like, for both relatives, AND patients who have to suffer through this absolutely absurd system!
I asked my wife what all of this feels like for her. The waiting times, the thoughts about self medicating, the whole process so far. (Since we haven’t even really gotten in the door yet because there is literally no loophole to get her help)
These are her thoughts:
“The waiting times feel terrible. Like, just thinking about how long I have to wait to get the care that I know deep down that I need, gives me a black hole of emptiness in my chest, where I have to try really hard to not break down in tears on the spot. Because it is so frustrating to know exactly what you need, and not be able to get it through the health care system in a remotely timely manner, and if you were to risk going through the process of self medicating, that you are also risking to be denied care for trying to feel better in the meantime. It just feels really messed up. It is so disheartening to see the waiting times grow longer and longer. Like, when I got my first time, it was 14 months waiting time, and now it is basically 10 months longer. It is just really tough to hang in there, and just try to be ok with not getting help. Its really really tough. and like, it may seem like everything is ok, because I try to stay positive, especially during the day when I can keep busy with something. But especially in the evenings, when I start to wind down, start trying to relax, It is so easy to think about how much time is ahead of you. How much longer you are going to have to spend waking up in the morning and not wanting to see yourself in the mirror. That hurts. Waking up in the morning, and going to bed every night, and not feeling like its you who is looking back at you in the mirror is deeply unsettling and very emotionally draining.
Self medicating feels like a scary prospect, but it feels like it would make so many things so much easier. like, from what I understand it is VERY common to self medicate here as a transperson, because the waiting times are INSANE. and when I first started accepting myself, I dismissed the whole self medicating thing completely, I didn’t see why I would ever need that. but about 8 months down the line, I can 100% understand why people turn to that. Its like, you are walking around with a broken leg, and all you want is a crutch so that you can walk better. It wont be perfect, but you will be able to walk better. and over time your leg will heal, and yet. The medical system says that “you can’t have a crutch. We have to investigate your broken leg for 2-3 years before you can have one. and if you get one on your own, we may deny you help later.”
A situation like this sounds so absurd, but this is what it feels like for a transperson who has to withstand the extremely long (2 years) waiting tie to get into an evaluation here in Sweden. It sucks. This would NEVER be acceptable if it was a physical illness.
I am willing to bet that a good 90% of the people on the waiting lists here would consider their case urgent. I mean look at the rate of attempted suicide in the trans community before people get treatment. The rates are largely tied to how you are being treated by friends, family and society, so in that regard I am lucky. That is part of the reason that I am coping relatively well. But, I can see why they do not let emergency status effect how quickly someone gets care if they are trans, because basically everyone would be on the emergency list so it wouldn’t make a difference.
I want my support system to understand how much it means to me to have your support and love, while I am going through this. I would not be where I am without you. I wish that I could properly explain how difficult this is. because I probably do a fairly good job of appearing that everything is ok in day to day interactions, but its really not ok. Its just not. But I do my best to keep strong.
I wish that the government knew how many people are suffering because they can not get help in a timely manner. I would not be surprised if the fact that we do not get care is costing more in the long run, because of suicide attempts and therapy, and everything else. It should not come down to costs in the long run anyways, because it should be about providing care to people that need it.
There are many great sources that point to the effectivity of relaxing the restrictions that are in place before receiving hormone therapy for transpeople. WPATH’s (World Professional Association for Transgender Health) Standard of Care’s guidelines do not require a year or more of therapy before receiving treatment with hormones. They suggest that somewhere between 1 to 4 appointments is enough. The Swedish way of having a 4 to 12 month evaluation is outdated, and is causing the overall quality of care to go down for so many people as the waiting times get longer and longer.”
Its hard for me to even put in to words how I feel, but I am going to try…
From the beginning this has never been something that I expected to face. I never knew before November that my wife was trans. I mean, I knew that she was not especially masculine, but that never bothered me in the least, as it was not her body that I fell in love with. It was her brains, her kindness, her personality, and her nose. (yes. I really like her nose)
She has been my number 1 supporter through all of my mental health struggles, and when she came out to me in November of last year, I never once doubted that I would support her.
This whole time between November and now has gone by so fast, but the one thing that hasn’t changed is that she has still not gotten the help she deserves. She works so hard putting up a front to try to be ok, I know that she does her best so that she can help me when I need it.
Now its my time to fight for her. I am so tired of feeling like she is isolating herself, because she is uncomfortable. I want to be able to be intimate with her again! I miss just being able to be near each other without the fear of her being uncomfortable with the situation.
When she first brought up the idea of self medicating, I panicked. my heart jumped through my chest, because that was such a scary thought. (I was definitely misguided because I thought it would be with hormone injections, and that is not the common way of treatment anymore.) I told her I was against it and we just let it sit. I told her that we would keep fighting and keep pushing forward so that it wouldn’t be needed.
Since then I can not even begin to count the number of hours I have spent on the phone yelling at health care professionals, and the number of times I have looked through the laws (in Swedish i might add) to try to figure out what a loopholes are available to help her get through this. I have researched different options, looked into going to other countries, tried to figure out prices, and weighed all the risks for each option.
This is how I got to the stance that I am at on self medicating. After all of the time spent calculating, and weighing the risks I am still not convinced that it is a situation that will be healthy for both of us. This article isn’t about my stance on the situation though. The issue at hand is that it should NEVER come to a time where we have to debate this!
I feel so trapped. not by my wife. I am happy with her. She loves me and treats me with more respect than I deserve a lot of the time. She pushes me to be the best person I can be. I feel trapped by the system. I can normally act like a bull in a china shop and eventually convince people to give me what I need, but this time, its not working. It feels as though there is literally no other option if she wants treatment. This is absurd. She should not have to be in charge of her own health care in this way. She should not be forced to buy medicine at a high cost from another country, in order to get help. She has done EVERYTHING correctly, but it is just not enough. There is nothing more that we can do.
She has talked with friends, and is going to try to change some things with her mindset, and hopefully that will help. I would be lying if I said I was not scared though. I am scared that we are going to have to try to self medicate, as I can not fix the person she sees in the mirror not matching. I see that she is beautiful, and I accept her for who she is, but this isn’t about the world outside accepting her. The issue is she is not able to accept her own body as it is, because its build does not match how she feels.
I wish that there was something I could do. I wish that there was some way around this absurd system, but from everything I can find we are stuck. My biggest hope is that maybe some politician will read this, and help push for some changes. Maybe it will not make things better before my wife is able to get in, but this is not just about her anymore. This is about all trans and nonbinary people in Sweden who deserve better.
If you want to help, the best thing you can do is share this article, help the word spread so that the media, and politicians here in Sweden are not able to ignore this anymore.