Blog by Lotta Borg Skoglund
About three to nine percent of all children and adults worldwide fulfill the criteria for ADHD.1 Being so prevalent and persistent as ADHD is, you might think that “it can’t be that serious” or that “everyone are likely to have a touch of ADHD these days”. Few things could be further from the truth. The fact is that those individuals that fulfill the criteria for these four letters A, D, H, D will, without a proper diagnosis and adequate support or treatment, have a reduced life expectancy of eight to thirteen years! EIGHT to THIRTEEN YEARS!!! So, ADHD is NOT something that we can take lightly. This diagnosis has serious implications for those suffering from it. But on a more optimistic note, the plethora of problems that accompany undiagnosed and untreated ADHD2-6 can be prevented if we detect ADHD in an early age and tailor interventions with ADHD in mind.
It is well established that early detection, correct diagnosis and adequate treatment is crucial to prevent development of mental and physical comorbidity to ADHD. However, boys are diagnosed more often and at an earlier age than girls. The boys thus get get a head start of several years. Girls more often that boys remain undiagnosed during their formative teenage years, the period in life when the sex hormones kick in. Even though it should come as no surprise that biology needs to be factored into the assessment, diagnosing and treatment of mental health conditions such as ADHD, this is in fact very seldom the case in today’s standard of care. Precision health for female mental health conditions still seems quite far away, and no evidence-based tools for females taking predictable hormonal changes into account are currently available in clinical practice.
Letterlife aim to improve precision medicine, encourage self-care and provide accurate and objective data for the shared decision-making and tailoring of effective standard of care for girls and women with ADHD and ADHD-like symptoms. Our long-term goal is to close the gaps between female and male health. Critical for attaining these long-term goals, is health care efforts that are co-created with the target population. That is why Letterlife is not developed for but by women with ADHD. Everyone who lives with a psychiatric diagnosis knows that mental ill-health doesn’t respect office hours, or take vacations, long weekends, or even lunch breaks. When you suffer from mental health problems or live as a neurodiverse individual, this is your reality 24/7.
Importantly, a human being is so much more than his or her diagnosis. Everyone has their own unique strengths, and challenges. What creates stress in one person’s life brings balance someone else’s. The one thing that we do know however is that every brain is unique, and each person has their own individual “brain map”. Letterlife is designed from the conclusion that support and treatment then needs to be tailored accordingly. That is what we refer to when we talk about precision medicine, and this may seem both logical and easy to attain but the fact is that it’s not. To move towards precision health and precision medicine and to be able to engage in true cocreated care, everyone (you, your healthcare professionals, your family members, researchers, and society as a whole) needs to speak the same language. The first step to achieve such a goal would according to us then be to collect as much and precise data about you and the things that affect how you feel and function over time as possible. Importantly, for girls and women, ADHD-symptoms, ADHD-medications, overall well-being, and everyday functioning is influenced by how hormones change throughout life and across each menstrual cycle. This unique information about you should be the only acceptable starting point for any medical decision taken towards better life balance and health.
The ADHD-24/7-model is our attempt to bring together the different and individual aspects of mental health and life balance, regardless of if someone have an ADHD-diagnosis or not. The 2 – 4 – 7 represent overarching areas in life that is relevant for anyone aiming to live as healthy and meaningful lives as possible:
2 – The Human
You, like all of us human beings, regardless of your underlying (dis)abilities or psychosocial status need:
- A social context where someone knows you, where you can express what you think and feel without being judged.
- A sense of being part of something greater than yourself, where what you do has a meaning and a purpose, and where you feel that you contribute to a the greater good and your community.
4 – The Brain
Your brain, as all other brains, is constantly processing and assimilating impressions from your surroundings and your body and everyone has their own “brain map” consisting of strengths and challenges in:
- Overviewing, planning, organizing, structuring, and prioritizing all the information you need to assess to be able to maneuver in everyday life.
- Regulating your emotions, energy- and activity levels, sleep or wakefulness, and your appetite.
- Filtering, sorting, and discarding irrelevant information and stimuli from your surroundings and your own body.
- Shifting focus, starting up, stopping, or interrupting activities, trying something new when what you’re doing no longer works or stop negative ruminating thoughts from poisoning your minds.
7 – The Life
Even though almost everyone today, knows how important it is to take care of the body and the brain through a healthy and balanced lifestyle, it seems like many with ADHD find it unreasonably hard to establish and maintain these healthy routines. Unfortunately, these challenges have long-term consequences and the eight to thirteen years reduced life expectancy associated with undiagnosed and untreated ADHD can to a large extent be attributed to difficulties associated to seven important lifestyle factors:
- Diet – Due to difficulties sensing and regulating hunger and satiety, keeping to regular and healthy routines for eating, intense cravings for sugar and carbs. Maybe you forget to eat when you are hyper focused on something really stimulating and absorbing or eat too much or too fast and constantly must struggle to stop eating once you start?
- Exercise – Due to difficulties in establishing healthy and balanced routines. Maybe you struggle with getting started or maybe you set unrealistic goals, get bored or hurt yourself because your exercise tends to turn into compulsive habits?
- Sleep – Due to difficulties in going to bed, unwinding at night, or getting out of bed in the mornings. Maybe you suffer from light and restless sleep or use sleep as an escape or defense mechanism when life feels to overwhelming?
- Stress – Due to constant internal restlessness. Maybe you struggle with relaxing even during your leisure time and thus never get enough recovery? Or maybe you feel haunted or stressed out even though nothing is urgent or important to resolve right now?
- Emotions – Due to emotional dysregulation and subsequently difficulties in nurturing and maintaining significant relationships in life. Maybe you suffer from rejection sensitivity dysphoria (RSD), due to low self-esteem, loneliness due to misunderstandings or social exhaustion due to impaired executive functions?
- Addictive Behaviors – Due to difficulties in quitting tobacco, drinking too much alcohol, taking drugs, or gambling. Maybe you can’t control your screentime, is a “workaholic” or waist precious recovery or family time on social media?
- Finances – Due to difficulties in economic decision making. Maybe to struggle to remember to pay your bills on time, get frequent payment remarks or engage in impulsive online shopping?
Connect the Dots!
Once you have mapped yourself out according to the ADHD 24/7-model it suddenly becomes possible to detect day to day changes and potential effects of natural hormonal fluctuation on your daily life, habits, routines, and quality of life. A first step may be to establish where you are right now and where you would like to be, your ideal scenario regarding the most important lifestyle factors according to you. By continuously tracking how your 24/7-profile is affected by your hormonal status, your medications, we will often quite soon start seeing interesting and quite unique patterns in your everyday life and functioning. We can then use this pattern, your individual personal data, to start connecting the dots for how different aspects of your life are interconnected and influence one another.
Knowledge is Power!
Our hope is that you, when you understand more about why you feel the way you feel and act the way you do, and how different parts of your life are tied together, will feel empowered and motivated to start working towards better health and quality of life. The motto should always be to change a) the things with the greatest potential to improve your health and quality of life and b) the things that in within your control and accept the things that you can’t influence. The power of self-awareness and self-compassion in these important processes cannot be overstated. Through effective and targeted selfcare you will hopefully be able to take a more active part in improving your physical and mental health. Best case scenario a greater understanding and compassion for yourself will also positively affect your relationships at home and at work and hopefully make you less dependent of the health care system.
The 24/7-model is not a magic bullet or a quick fix. And ultimately, you will be the only one who can do all this hard work. But when you know why somethings may be more challenging for you than for your peers without an ADHD-diagnosis and when you detect the first, small but clear signs of progress, I promise you that you’ll find that it’s worth it. Because getting to know yourself and your unique brain in this simple way is truly interesting, rewarding, and empowering!