Keys and guidelines to contribute as health professionals to the improvement of the quality of life in AD patients
Generally, the assessment of rheumatic diseases has had its main basis in the study of physical variables. However, research in recent years reveals that comorbidity with psychological disorders is increasing; With this, the quality of life of the patient is reduced; Therefore, it is necessary to guide the general population in this regard and implement inclusion strategies, as well as timely multidisciplinary intervention..
It is a chronic and reactive form of arthritis that mainly affects the back, but also the joints, nerves and bones, producing stiffness and chronic pain, it is autoimmune in nature; It mainly affects the base of the spine producing low back pain that can become disabling due to the high degree of pain that they produce; in turn, the joints are inflamed and swollen. Over time, the disc space may disappear, mainly that of the affected vertebrae.
Secondary AD can be associated with inflammatory bowel disease, psoriatic arthritis and reactive arteritis (Reiter's syndrome) or, accompanied by primary ankylosing spondylitis, which is why they are classified within serotonergic spondyloarthropathies.
The disease generally begins between the ages of 17 and 40, but can begin in earlier stages, although being more aggressive, the severity of symptoms and limitation of movement vary from one individual to another. Genes and heredity have been found to play a very important role. There is evidence that it can be triggered by some types of infection, the study of different classes of bacteria indicates that they could influence the development of AD.
The delay in diagnosis has represented a great problem, as this is a chronic degenerative disease, 75% of people take years to be diagnosed for various causes. In men, diagnoses are generally given between 5 to 7 years, among the population with more access to health and education. In the case of the most disadvantaged, it can be postponed for up to 15 years.
In women, the diagnosis can be delayed another 4 to 5 years on average, compared to the time of diagnosis for a man, or even missed. Why? Keep reading, later you will find an answer.
Most chronic diseases negatively impact different areas of the person. There are a series of psychopathologies associated with AD that can affect the prognosis and quality of life of the patient.
Chronic pain and its consequences, such as limitation of movement, generate a high negative emotionality for long periods of time when it is not treated properly.
The greater the inflammatory activity, pain, stiffness and functional limitation due to axial deficiencies… The higher the risk of suffering from psychological disorders ”, the psychological variables can affect the expression of pain and the rest of the physical variables, worsening the symptoms associated with these pathologies. that will result in a detriment to the overall health of the patient.
According to the report by Novartis (2017), where they point out that limitations in the daily activities of patients negatively affect mental health in up to 45% of people with spondyloarthritis, as a result of the impact of symptoms and their chronicity.
Next, I will cite a series of psychological variables, I call them that, due to their high impact on the response to treatment of patients with AD, these are factors that can alleviate or worsen the symptoms of the disease although they are not merely biomedical.
In the first stage, many experience loneliness due to misunderstanding and lack of containment, due to a lack of understanding towards the symptoms and the disease itself, with depression, anxiety and sleep disorders being the most common psychological risk factors in patients with EA.
As the disease enters more advanced stages, where the consequences of movement limitation are affected other important areas of the individual such as work, professional, family and partner areas for example; coupled with the impossibility of healing and the partial effectiveness of the treatments used, they keep the person in a constant bad-being that generates a lot of anxiety, fear and sadness, putting at risk the emotional and mental state of the patient.
The constant uncertainty and excessive worry about the future, the fear of thinking that perhaps later there will be greater limitation of movement, with a slight tendency to present a greater frequency of catastrophic thoughts, terribly raise the levels of anxiety in the person. "It is better to occupy ourselves with something that we can do, than to worry about everything that we cannot do, especially since it takes a little longer than before to carry out apparently simple daily activities".
Insomnia, because the pain intensifies and many patients cannot stay in bed for many hours at a time, which produces excessive daytime sleepiness and fatigue, which after years results in chronic fatigue, which affects all areas of the body. person in a negative way.
Likewise, we can observe circadian rhythm disorders, due to the persistent presence of an unstructured sleep pattern and unspecified dysomnias..
They are the origin of movement avoidance, certain dispositional variables such as generalized anxiety, coupled with cognitive variables such as catastrophizing and over-adaptive or normalized beliefs about pain. The lack of movement intensifies the chronification of the pain, and this, in turn, increases the limitation of movement per se.
Dimensions such as the feeling of joy, gratitude, the ability to be surprised and to laugh contribute to the improvement of the state of health. As well as, the cognitive disposition that is in part, our way of conceiving the world. If we adopt a positive attitude towards daily challenges, this directly influences physical and psychological health..
There are many social stressors around AD, mainly generated by the perception of the image, which due to the deformities of the advance of the condition, the work and relational problems derived from the disease, can result in cognitive distortions, generate fear of suffer rejection and abandonment, among others.
Therefore, many patients prefer to hurt themselves or allow situations of abuse, to give pleasure to others, whether consciously or not, in this way, they believe that they will be less vulnerable to being rejected or abandoned even if their disease progresses.
Sometimes the sexual desire is diminished by the periods of reactivity of the disease, pain, stiffness and fatigue of the body. Men can present episodes of impotence, erectile and testicular dysfunction, this is multifactorial, since it even has to do with the difficulty that the patient faces when being in certain positions. Likewise, there is an increase in relationship problems associated with the disease.
The alterations in body image that are presented, if not treated psychologically, can generate loss of self-esteem, decrease in sexual satisfaction and ultimately, trigger a lack of interest in sexual relations, there is also a decrease in the frequency of sexual relations among patients with this diagnosis, thus losing the benefits that sex brings to health.
It is important to educate ourselves in sexuality, the most powerful sexual organ in the body is called: brain! We have to reinvent ourselves, first in the way we relate to ourselves, and then to others. We can find new ways to generate pleasure, without hurting ourselves. During sex, important neurotransmitters are released, such as dopamine, oxytocin, endorphins, etc. They can help us relieve a little pain, calm anxiety and ward off negative thoughts; Well, during intercourse and afterwards, they are released, generating in us a feeling of well-being, that's why: Love yourself and let yourself be loved! That is good for your body, your mind and your heart..
AD is more easily recognized in men. In women, due to sociocultural factors even, the diagnosis takes approximately 4 to 5 years longer, compared to men, or is ignored. Hormones are a bit to blame for these differences, adding, for example, a little estrogen, which plays an important role in pain perception. Also, it has been observed that the level of reactivity of the disease is changing, according to the phases of the menstrual cycle in women suffering from chronic pain, with an increase in symptoms before and during the menstrual period..
Men tend to focus more on the physical sensations they perceive, and women on the emotional aspects of pain, which produces more emotional and even physical pain, because the emotions generally associated with pain are negative.
Young people and women have a higher risk of suffering psychological problems, according to the Axial Spondyloarthritis Atlas in Spain 2017, the study reveals the risk of suffering from a psychiatric disorder is higher in people with AD, 70.4% in women and 60 , 6% in men.
Other social factors are also involved, such as gender, as some doctors tend to rule out some physical symptoms in women, associating them exclusively with psychological problems, thus delaying their diagnosis and quality of life. This occurs because the symptoms that the patient refers to as: insomnia, waking up at night or very early in the morning due to pain, chronic fatigue, strange pains of different intensities in various parts of the body, for no other apparent reason, the inability to stay in the same position for a long time, fear and panic attacks, the tendency to isolation that produce the occasional and increasing inability to participate in activities with family and friends, apparent personality changes and emotional lability, These are some symptoms that could easily be associated with mood disorders, stress, generalized anxiety, and this is exacerbated by the hormonal changes that occur, marking important differences in the stages of development of women.
It can be of different types, with its possible combinations, we mainly find affective lability (ease to change affective state). Certain personality changes can be observed due to a more uninhibited type than the one that previously presented, poor impulse control compared to what was usual, sexual indiscretions, etc. Other types of changes tend to be towards more aggressive behaviors, with paranoid traits and attitudes of apathy mainly. The presence of one of these traits can be accentuated, or they can occur in a combined way to different degrees.
There are significant relationships between personality, moods, ways of coping and the effect on perceived daily pain. Pain can be modified based on the type of coping strategies that are put into play, and that this choice will be favored by the type of personality: The more maladaptive styles of the normal personality will be more related to the level of pain.
Accepting this new condition, and embracing it with all its changes and challenges will have a high impact on health and quality of life, this is the first step towards our health, therefore one of the most important, the longer we take to accept and in raising awareness of our own capacities and limitations, we are giving more freedom to the disease to continue advancing.
AD is an autoimmune, chronic-degenerative condition, all the efforts you make to be well will directly contribute to your quality of life and with a good multidisciplinary treatment you can delay the negative effects of the disease; but you must be aware that this does not guarantee days free of pain and suffering the consequences of the disease.
Much encouragement and realistic optimism! The encouragement should not come from the belief that everything will be better tomorrow ... But yes, from the internal conviction that whatever the circumstances, we will fight because our attitude and responses are the most efficient and adaptable to the context we live in, that is: the best! This is a variable that we CAN control and all this contributes to a subjective feeling of well-being.
Many days your mind and your heart will tell you what you want and you will be able to be in that much desired job interview, or in that special family event, that you will surely be fine on Saturday night to go out to dance a little and move your skeleton , that tomorrow you will take your little one to your little one to the park and that they will play soccer and who knows how many other things ... But your body just hours before yells at you that you will not go, simply because the pain is so intense that it is incapacitating ...
Breathe long and deeply, invoke and develop patience in all its forms, it is important that you begin to develop tolerance for frustration, you cannot change the fact that you will not be able to go, nor the fact that you have to give as much advance notice as possible in If you have made commitments, be sincere about the reasons, your condition deserves it! There will be more awareness among the general population, while we are making this condition known and you will find the empathy of many people. However, avoid giving long explanations, most people do not fully understand this disease and you could end up more frustrated and sad when seeing that people do not seem to understand and far from supporting us, they exert unnecessary pressure on us. To those who are really interested in knowing about your condition, you can pass on some links to learn a little more about AD and if you have comments after reading, they can discuss them.
For when your plans are frustrated, I recommend that you always have a plan B, C, D at hand ... Focusing our energy and attention on another activity that interests us can reduce the feeling of discomfort and contribute to being better although reactivity of the disease is older, it can be something as simple, as always having a good book on hand.
Many of us would like the illness to be more predictable, allowing us to make plans, activities, and commitments. Sometimes, although we really want to continue doing things, our body asks us to stop, to stop for a moment ... Perhaps it is time to listen to him and attend to his needs, which we have surely ignored for a long time, that is why we came to this point of chronicity.
Practicing breathing, mindfulness, meditation and relaxation techniques are very powerful tools to deal with these psychological risk factors. Breathing can help us change states of anguish, anxiety, emotional lability and fear, for states of relaxation and greater clarity. Same that benefit us in terms of pain perception.
It is better to always think about what we can do even with everything and the limitation of movement and pain, than to think about all those that we can no longer do, it is preferable to use our energy to enjoy with gratitude, prudence and wisdom of each day with movement.
EA teaches us that stiffness increases pain and even limits physical movement, for this reason, we must try to preserve our body flexibility as much as possible through movement and following the advice of health professionals, and above all try to develop mental flexibility, tolerance to frustration and patience, as these are virtues that we will need more to adapt to the challenges of life and that the same chronic-degenerative condition imposes on us.
Be indulgent with yourself: AD and pain affect different areas of your life, and despite this, they can be great teachers, if we know how to listen to them, to be able to go at their own pace.
First by listening and respecting their abilities, their limitations, following medical suggestions; Take care of yourself, eat well and try to keep moving, remember that even if the movement is painful, it will be greater if we allow the disease to make us stiffer each time, if we allow unfounded fear to limit our movement more and more , then we will also limit our freedom to do many things. Performing delicate movements, always accompanied by correct breathing, help us deal with the pain a bit..
Spondylitis = In
Ankylosing = Action
Affective traits, whether positive or negative, can influence the physical state of patients. Let's use this in favor of health, choosing to take things with a sense of humor, which is a trait of positive adaptability and intelligence..
Personality affects the course of the medical disorder, once it has been diagnosed. Sometimes, academic and professional aspirations can be truncated because of the disease, this due to the inability to spend a long time in the same position, the occasional absence due to reactivity of the condition, chronic pain, all these challenges and others, face day to day patients with this condition.
It is very helpful, having the support of people who suffer from AD, living with people who go through or went through the same problems as you, will make you feel great relief, the shared knowledge about the most recent research and advances in treatments that they can share, the therapeutic support of a person who lives a series of conditions similar to yours, will help you not feel alone, to know more about your disease and all the things you can do to have a better quality of life than there are many.
As the name implies, these groups are very supportive, especially when the most common psychological problems associated with AD are depression and anxiety. In social networks you can find a large number of them, look for one or more that suit your needs and tastes.
The increase in autoimmune diseases is on the rise, so it is necessary to establish multidisciplinary and timely intervention strategies as health professionals. Psychological factors exert great influence on functional capacity among spondylitic patients; Scientific literature indicates that symptoms of depression, anxiety and other psychological problems are present in almost half of patients with AD and are proportionally influenced by functional limitation, painful entheses and level of education.
A timely diagnosis can help reduce the degree of disability and avoid associated psychological and socio-labor problems.
It is important to establish an interdisciplinary treatment plan, talk to your doctor and remember that psychologists are of great help, as they can design an appropriate intervention program according to the detection of specific needs and thus contribute to a better quality of life for the patient..
Practicing deep meditation techniques, mindfulness, relaxation, breathing, autosuggestion and mental control, can help us deal with pain and with the acceptance of many processes. By becoming external observers, we can acquire another more complete vision and stop drowning in pain, which indeed seems that due to characteristics of the disease, over time it becomes more chronic.
Given the comorbidity of AD with other psychological disorders, it is necessary to include psychologists within the multidisciplinary group of health professionals, since they are an effective complement to biomedical treatment to face the different stages of the disease and with the application of their strategies, They contribute to the best adaptation of the patient to their condition, while helping to increase their levels of well-being, and to the physical and emotional preparation to adapt with wisdom, grace and love to the changes that their body and condition impose on them..