Keys and guidelines to contribute as health professionals to improving the quality of life in EA 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; This reduces the patient's quality of life; Therefore, it is necessary to guide the general population in this regard and implement inclusion strategies, as well as timely multidisciplinary intervention.
- 1 What is Ankylosing Spondylitis (AD)?
- 2 Health consequences of a diagnosis and late treatment
- 3 Psychological variables that influence
- 4 8 Guidelines to improve the quality of life in patients with AD
- 5 Conclusion
What is Ankylosing Spondylitis (AD)?
Is a way chronicle Y reactive from arthritis what mainly affects the back, but also at joints, nerves Y bones, producing stiffness and chronic pain, it is of autoimmune character; mostly it affects the base of the spine producing lumbalgias that can become disabling due to the high degree of pain they produce; in turn, the joints are inflamed and swollen. Over time, the intervertebral 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, so they are classified into serotonin spondyloarthropathies.
The disease usually begins between the 17 and the 40 years, but it can start at earlier stages, although being more aggressive, The severity of symptoms and limitation of movement vary from one individual to another.. It has been determined that genes and inheritance play a very important role. There is evidence that it can be triggered by some types of infection, the study of different kinds of bacteria indicates that they could influence the development of AD.
Health consequences of a diagnosis and late treatment
The delay in diagnosis has been a big problem, since this is a chronic degenerative disease, 75% of people take years to be diagnosed for various causes. In men, diagnoses generally occur between 5 and 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 for another 4 to 5 years on average, compared to the diagnosis time of a man, or even get to overlook. Why? Keep reading, you'll find an answer later.
Psychological variables that influence
most of chronic diseases have a negative impact on the different areas of the person. There are a number of psychopathologies associated with AD that may overshadow the patient's prognosis and quality of life.
The 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.
A greater inflammatory activity, pain, stiffness and functional limitation due to axial deficiencies ... Increased risk of suffering from psychological disorders ”, psychological variables can affect the expression of pain and other physical variables, worsening the symptoms associated with these pathologies, which will result in a detriment in the overall health of the patient.
According to the report made by Novartis (2017), where they state that the limitations in 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, for its high impact on the response to treatment of patients with AD, these are factors that can relieve 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 lack of understanding towards the symptoms and the disease itself, being depression, anxiety and sleep disorders, the most common psychological risk factors in patients with AD.
2. Generalized Anxiety
When entering more advanced stages of the disease, where the consequences of limited movement go affected other important areas of the individual such as work, professional, family and couple 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 Y 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 greater frequency of catastrophic thoughts, raise anxiety levels terribly in the person. "It is better to deal with something we can do, than worry about everything we cannot do, especially because it takes us a little longer than before to do seemingly simple daily activities”.
3. Sleep disorders
Insomnia, because the pain intensifies and many patients cannot stay in bed for many hours in a row, which produces a excessive sleepiness by day and fatigue, which after years results in chronic fatigue, which affects all areas of the 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.
4. Fear-avoidance model of pain
They are the origin of movement avoidance, certain dispositional variables such as generalized anxiety, coupled with cognitive variables such as catastrophism and over-adaptive or normalized beliefs about pain. Lack of movement intensifies the chronification of pain, and this in turn, increases the limitation of movement per se.
5. Affective dispositions of the sense of humor
Dimensions such as the feeling of joy, gratitude, the ability to be surprised and laugh contribute to the improvement of health status. 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 influences physical and psychological health directly.
There are many social stressors around AD, mainly generated by image perception, which due to the deformities of the progress of the condition, labor and relational problems derived from the disease, can result in cognitive distortions, generate fear of suffering 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, that way, they believe they will be less vulnerable to being rejected or abandoned even if their disease progresses.
7. Sexual problems
Sometimes the sexual desire is diminished by periods of disease reactivity, pain, stiffness and fatigue of the body. Men can get to present episodes of impotence, erectile and testicular dysfunctionThis is multifactorial, since it has to do even with the difficulty that the patient faces when being in certain positions. Likewise, there is an increase in relationship problems associated with the disease.
Alterations in body image that are presented, if not treated psychologically can generate loss of self-esteem, decreased sexual satisfaction and in the end, it triggers a disinterest in sexual intercourse, there is also a decrease in the frequency of sexual intercourse 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 of relating to ourselves, and then to others. We can find new ways to generate pleasure, without hurting ourselves. During sex they are released important neurotransmitters, such as dopamine, oxytocin, endorphins, etc.. Same that can help us relieve pain a little, calm anxiety and drive away negative thoughts; Well, during intercourse and then, they are released, generating in us a feeling of well-being, so: Love yourself and let yourself be loved! That does good to your body, your mind and your heart.
8. Gender differences
AD is more easily recognized in men. In women, due to sociocultural factors, the diagnosis takes approximately 4 to 5 years, compared to that of men, or is overlooked. The hormones are a little guilty of these differences, as they add, for example, a little estrogen, which plays an important role in the perception of pain. Also, it has been observed that the 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 concentrate more on the physical sensations they perceive, and women on the emotional aspects of pain, which causes them more emotional and even physical pain, because the emotions usually associated with pain are negative.
Young people and women are at greater risk of suffering psychological problems, according to the Atlas of Axial Spondyloarthritis 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 also intervene, 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 in the morning very early due to pain, chronic fatigue, strange pains of different intensities in various parts of the body, without any other apparent reason, the inability to remain in the same position for a long time, fear and crisis of anguish, the tendency to isolation caused by the occasional and growing inability to participate in activities with family and friends, apparent personality changes and emotional lability, are some symptoms that could easily be associated with mood disorders, stress, generalized anxiety and this, is exacerbated with the hormonal changes that occur marking important differences in the stages of development of women.
9. Personality change due to a medical illness, in this case: EA
It can be of different types, with their possible combinations, we find mainly affective lability (ease to change emotional state). You can see certain personality changes for one more type uninhibited to the one who previously presented, a poor impulse control regarding what was usual, sexual indiscretions, etc. Other types of changes are usually towards more aggressive behaviors, with paranoid traits and attitudes of apathy mainly. The presence of one of these traits may be accentuated, or they may occur in combination in different degrees.
There are significant relationships between personality, moods, ways of coping and the effect on perceived daily pain. The pain is susceptible to change from the type of coping strategies that are put into play, and that this choice will be favored by the type of personality: The most maladaptive styles of normal personality will be more related to the level of pain.
8 Guidelines to improve the quality of life in patients with AD
1. Surrender to illness, but not to health
The acceptance of this new condition, and embracing it with all its changes and challenges will have 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 become aware of our own abilities and limitations, we are giving more freedom to the disease to continue moving forward.
2. Be positive while remaining realistic
AD is an autoimmune, chronic degenerative condition., all the efforts you make to be well, will contribute directly to your quality of life and with a good multidisciplinary treatment you can cause the negative effects of the disease to be delayed; but you must be aware that this does not guarantee you pain-free days and suffer the consequences of the disease.
Much encouragement and realistic optimism! The mood 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 that we live, that is: the best !, this is a variable that YES we can control and all this contributes to a feeling of subjective well-being.
3. Develop greater tolerance to frustration
Many days your mind and your heart will tell you what you want and you can be in that job interview so desired, or in that special family event, that you will surely be fine on Saturday night to go out dancing a bit and move the skeleton , that tomorrow you will take your little one to your park and they will play soccer and who knows how many more things ... But your body just a few hours before yells at you that you will not go, simply because the pain is so intense that it is disabling ...
Breathe long and deeply, invoke and develop patience in all its forms, it is important that you begin to develop frustration tolerance, you cannot change the fact that you will not be able to go, nor the fact that you have to notify as soon as possible in case you have made commitments, be honest as to the reasons, Your condition deserves it! There will be more awareness among the population in general, as we report this disease and you will find the empathy of many people. Nevertheless,avoid giving long explanations, most people do not finish understanding this disease and you could end up more frustrated and sad to see that people do not seem to understand and far from supporting us, they exert unnecessary pressure on us. To those who really want to know about your condition you can pass some links to learn a little more about AD and if they 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 on hand ... Concentrating our energy and attention on another activity that interests us, can reduce the feeling of discomfort and contribute to being better although the reactivity of the disease is greaterIt can be something as simple as having a good book at hand.
4. Don't make your body scream at you, better listen to it before
Many of us would like the disease to be more predictable, so that it allows 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 it and attend to its needs, which we have surely ignored for a long time, so we reach this point of chronicity.
5. Change the ways you perceive pain
To practice breathing techniques, mindfulness, meditation and relaxation, 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 always better to think about what we can do even with everything and the limitation of movement and pain, than to think of 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 .
5. Learn from what the disease teaches us
The EA teaches us that stiffness increases pain and even the limitation of physical movement, therefore, we must try to preserve our body flexibility as far as possible through movement and following the advice of health professionals, and above all try develop the mental flexibility, tolerance to frustration and patience, because they 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 forgiving of yourself: AD and pain affect the different areas of your life, and despite this, they can be great teachers, if we know how to listen, to be able to go at their own pace.
6. Dare to take responsibility for your own health and your body!
First listening and respecting their abilities, their limitations, following medical suggestions; take care of yourself, eat well and try to keep moving, remember that although the movement is painful, it will be greater if we allow the disease to make us more rigid every time, if we allow unfounded fear to limit us more and more movement , then we will also limit our freedom to do many things. Performing delicate movements always accompanied by proper breathing, help us deal a little with the pain.
Spondylitis = InAnkylosing = Action
So: ¡Put into action as soon as possible !, "organ that is not used tends to atrophy."
7. Laugh, surprise yourself and try to maintain a good mood
Affective traits, whether positive or negative, can influence the physical condition of patients. Let's use this for health, choosing to take things with a sense of humor, which is a feature of positive adaptability and intelligence.
8. Support Groups for people with Ankylosing Spondylitis
Personality affects in the course of the medical disorder, once it has been diagnosed. Occasionally, academic and professional aspirations can be truncated because of the disease, this due to the inability to be in the same position for a long time, the occasional absence due to reactivity of the condition, chronicity of pain, all these challenges and others, face day daily patients with this condition.
It is helpful to have the support of people with 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 regarding treatments that they can share, the therapeutic support of a person who lives a series of conditions similar to yours, will help you not to feel alone, to know more about your disease and of all the things you can do to have a better quality of life that are many.
As the name says, these groups are very supportive, especially when the most common psychological problems associated with AD are the depression and the anxiety. In social networks you can find a large number of them, look for one or more that fit 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. The psychological factors exert great influence on the functional capacity among spondilitic patients; The scientific literature indicates that the 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 synthesis and level of education.
A timely diagnosis can help reduce the degree of disability and avoid the associated psychological and socio-labor problems.
It is important to establish an interdisciplinary treatment plan, talk with your doctor and remember that psychologists are very helpful, because they can design an appropriate intervention program according to the detection of specific needs and thus contribute to a better quality of life of the patient .
Practice deep meditation techniques, mindfulness, relaxation, breathing, autosuggestion and mind control, can help us deal with pain and 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 the 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 in the multidisciplinary group of health professionals, as 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 patient's best adaptation to their condition, while helping to increase their levels of well-being, and physical and emotional preparation to adapt with wisdom, grace and love to the changes that their body and condition impose on them.