When Johanna goes to bed, it's like she's listening to four different podcasts in her head at the same time.
The small green terraced house where she lives with her husband is currently also home to two rabbits, a cat, two desert rats and a small bird, a Katarina parakeet. All are rescue projects. The couple takes care of animals abandoned by others.
- They help a lot. Animals sense how you feel quite well, she says.
The thoughts buzzing like podcasts have always made it hard for her to sleep. She can handle the job, but has also been close to exhaustion. She suspected that she had ADHD and turned to health care, had to see a psychologist and occupational therapist who believed the same thing. But then the decision was made that she functions too well in everyday life to be investigated for that.
- What I really reacted to was that they said they are pretty sure I have ADHD, but, unfortunately, I was not approved for an investigation.
She is not alone in getting that kind of message.
Psychiatry around the country is under pressure, the large increase in ADHD diagnoses in recent years is "system-affecting", according to the Norwegian Medical Ethics Council.
New guidelines will change the way healthcare responds to the wave of ADHD.
Professor Sven Bölte leads us through the corridors at the Child and Adolescent Psychiatry Research and Development Center in Stockholm. This is where research and treatment of patients come together. At the far end, he has a small study with windows at the height of the roof ridges.
- Everyone probably agrees that something strange is happening, he says.
He is director of the competence center KIND for autism and ADHD, diagnoses that have always been debated. This autumn the waves have been extra high. A television program by Carina Bergfeldt stirred up debate, his colleagues write books and articles.
Sven Bölte is a little disappointed by their accusing tone towards each other, but he also sees that the view of how ADHD should be treated is in a phase of change.
The reason is the "strange" thing that is happening: how the number of ADHD diagnoses continues to increase. Among children in Sweden in the last 20 years, the increase is "exceptional", according to the National Board of Health and Welfare. Diagnoses are increasing in all age groups. A quarter of a million Swedes take medication for ADHD.
This presents psychiatry with new questions.
- Should we be more brutal, raise the threshold for diagnosis and support efforts?
It will be a societal issue, says Sven Bölte.
- What should the public sector offer, what do you think individuals should manage by themselves?
In a corner of Johanna's home stands "Nettan", an old mannequin converted into a demon in the form of a nun from a horror film, with a dark hood and face mask. The house is decorated for Halloween in every corner.
- Decorating, that's kind of what I can handle. I usually put on an audio book and walk around cleaning and fixing things, she says.
During the day, almost all her energy is used to cope with work, not much is left for social life. She has suffered from depression on and off throughout her life, but always found ways to cope. Last year, she felt that she couldn't cope on her own anymore, the stress and depression caught up. And she began to think it was ADHD.
She got to try group therapy and cbt, talk about her difficulties. Finally the news came. The medical record states that she is not granted an ADHD investigation "due to no disability".
- There are many things that I can handle. For example, I can manage my hygiene, I can clean, shop, take care of my animals. I have a job, I can manage my finances, she says.
These are the kinds of things that healthcare looks at to see if you have a disability.
DN has spoken to several people who have been told in primary care that they probably have ADHD, then psychiatry has rejected the referral because they function too well in life to be investigated.
- I don't function well. It's always at the expense of something else, says Johanna.
ADHD has become the most common diagnosis in the country's psychiatric clinics in recent years.
70 percent of the doctor's visits in child and youth psychiatry are about ADHD, according to the National Board of Health and Welfare, which warns that this may displace help for others with very difficult problems.
For all ages, care differs between regions and care agencies, is unequal and often insufficient.
In some parts of the country, the queue for an ADHD investigation can be several years long.
New national guidelines are meant to change that.
- You shouldn't have to wait for a diagnosis to get help, says Johan Söderlund, psychiatrist in the national working group for ADHD and autism within the National System for Knowledge Management, which is run by the country's regions.
The group has produced new support for how adult patients seeking treatment for ADHD symptoms should be prioritized. Concretely, this means that more people should be able to be offered help at health centers and rehab clinics, without being investigated for an ADHD diagnosis or receiving ADHD medication.
This should give those with greater needs faster access to specialized care.
- Many of the problems that people seek help for can also be explained based on different types of stress or that there are unreasonable demands and expectations in life and society, says Johan Söderlund.
In the adult psychiatry in southern Stockholm, where he is the medically responsible doctor, he estimates that 80 percent of the referrals are about ADHD.
At the same time, private companies that offer short waiting times for those who can afford it have increased their turnover by 300 percent in six years, according to the authority Vårdanalys.
If more people get help without a diagnosis, the queues would decrease and thus also the need for private diagnosis companies, says Johan Söderlund.
But changing care is slow.
A clothes rail in Professor Sven Bölte's office is completely covered in old accreditation badges from conferences in different countries. He himself grew up in Germany, and has many international contacts.
- Here in Sweden, I have sometimes heard that I have the wrong attitude. I have never heard that in other countries. There they say you have strong opinions, or different or interesting ones, he says.
He sees it as a symptom that Sweden is a homogenous society where it can be extra difficult to stand out from the norm. He believes that such cultural factors may be one of several explanations for Sweden's high use of ADHD drugs.
Sven Bölte has seen families have their entire lives changed for the better by ADHD medication. For a long time, the concern was that too few received help. He believes that diagnoses have increasingly begun to function as a way of distributing resources in society.
- Today, you need a diagnosis to get understanding, help and support.
At the same time, society has become faster and more complex, there are different types of demands than before in working life. At school, greater responsibility is placed on students to direct their own learning through group work and projects.
The diagnoses interact with those changes in society, says Sven Bölte.
- Today, it seems that more people find themselves in a situation where their way of functioning does not match the demands of the environment.
After the announcement that her ADHD investigation would not continue, Johanna fell into a deep depression. When she had thoughts of taking her own life, she turned to health care again, and had to start taking an antidepressant.
Now she takes four different medications. Antidepressants, anti-anxiety drugs, sleeping pills and a non-narcotic drug that can be given for adhd that her GP can prescribe without a diagnosis. Johanna finds that it helps her to concentrate, to complete things instead of them being left lying around.
- I feel free in all medications, which is sick. I'm thinking: do people do this for free? Are they this happy and able to focus, without drugs?
Still, the medications feel like a way to patch up and mend. She wonders if an ADHD diagnosis could lead to one tablet instead of four, access to better expert help to sort out life.
Around the country, healthcare is changing in different ways to meet ADHD patients. Region Skåne is now trying rapid assessments in just one or two visits. Region Östergötland recently decided that specialist psychiatry should only investigate people with moderate to severe problems with ADHD.
In Kronoberg, they are working hard to translate the new guidelines for prioritization into clinical everyday life, says Sandor Eriksson, area manager for psychiatry, rehab and habilitation in the region. Psychiatry cannot change on its own, everyone from health centers and municipal primary care to user associations needs to be involved.
- It will take a long time to create some kind of consensus on who to investigate and who not to investigate, he says.
In Västmanland, too, adult psychiatry is working to achieve good cooperation with primary care, says Mårten Tyrberg, psychological manager at adult psychiatry in the region.
It happens that they do not accept diagnoses from private companies.
- The assessments from some of the private actors are far too bad. And that puts the patient in a bind.
Psychiatry does not want to make psychiatry out of all people, says Professor Sven Bölte. That is why the question of how everyday life is affected is the most important criterion.
- People should be able to be a little as they are. Differences and diversity should be something good. But when there is a risk that being different leads to you not being able to cope with family life or school or that you harm others or yourself, then you have to act.
Johanna's plan is to put aside some money every month going forward, to save up for a private ADHD investigation. It can cost between 20,000 and 40,000 kroner.
- It will be a class issue, because I can't really afford it.
Selling the funds she got on her 18th birthday might help. But she is also worried that public health care will not accept a private diagnosis anyway.
- Then you hear that some want to get rid of their diagnosis, and that it will also be very difficult. It just feels so exhausting.
