Psychological and emotional management of uveitis
- Nelson Santos
- Oct 17, 2019
- 31 min read
Updated: Apr 3, 2022
Chronic uveitis presents a radical change in life. Not only in terms of physical health, but also in terms of perception. It provokes anxieties, desires to immerse oneself in all available information and a host of distressing emoons. Illnesses, especially those that are chronic, are a great physical and emotional challenge. They require a process of assimilation, far from the idealized fantasy shared by most people who wish to paint problems as "examples of overcoming one’s problems or limitations” (inspiration porn). Well-intentioned phrases such as "everything will be alright", "happiness lies within you", "keep a positive mindset" or "do not become a victim of your circumstances" are nothing more than phrases typical of a sociocultural infantile that lacks the ability to handle problems adaptively. All these phrases and advice are just well-intentioned words alienated from the emotional complexity of human beings. Maybe everything they say is true, but at the moment it does not feel that way: there is anxiety, fear, uncertainty. Optimism, in the absence of effective measures that promote proactive and adaptive problem solving, is not enough to heal. It ends up becoming a detractor, a denial mechanism, which manages to induce feelings of well-being instantly without taking a sincere look at our problems and without proposing lasting solutions.
Problems, traumas, pain and suffering are inherent aspects of life. They happen to all of us. Accidents, illness, death of loved ones, etc. happen. So it is normal to feel sadness, to have difficulty managing our emotions or to have difficulty resuming the life we had before. This can go on for an indefinite period of time and there is no need to feel ashamed about it. We are at a time when we collectively begin to create awareness of pain, suffering and trauma. Life hurts us all.
Uveitis is a disease that cannot be easily separated from mental and emotional health. It is very common for patients to experience anxiety, fear or stress during the course of their illness. These emotions, especially when experienced over a prolonged period of time, can become as debilitating as physical illness. However, stress is not inherently malignant; rather, it depends on the intensity, duration and frequency of the stressors. Going through stressful situations for short periods of time that are satisfactorily resolved does not lead to deterioration of mental or physical health. These situations are considered acute stressors. These stressors are very varied, but those related to the diagnosis and management of uveitis could include: medical appointments, tests and labs, medical procedures, etc. In contrast, chronic stressors, those situations that unleash overwhelming emotions over long periods of time and that cannot necessarily be resolved satisfactorily, can become extremely debilitating mentally and physically. These include diagnosis of a chronic illness, decreased/loss of vision, side effects of treatments, readjusting to a new lifestyle because of the chronic illness etc. These situations not only have a tremendous impact on people's quality of life but also predispose to the development of one or more chronic diseases.
Chronic physical illnesses are often comorbid with mental illnesses. Among them are mood or anxiety disorders, the most common being anxiety and depression. Because chronic physical illnesses significantly impact quality of life, it is normal for patients to go through a readjustment process in which they face emotions that are difficult to process. It is normal to feel sadness, anxiety, loneliness, frustration, concentration and sleep problems, bereavement, etc.; but it is also important to recognize the instances in which these emotions cause as much or more pain than the physical chronic disease with which patients have been diagnosed. For this reason, here are some important factors that can help the disease process:
Identify stressors
Stress has an inherent subjective aspect. Not everyone experiences stress in the same way. A situation that is highly stressful for one person will not necessarily be highly stressful for another, and both experiences are equally valid. Identifying stressors and the emotions they trigger is the first step in establishing a plan of action.
Acute stressors: internal locus of control
Acute stressors can be classified as those in which a person possesses the power to control, influence or solve the situation in which he/she finds him/herself. They are situations that have a tangible beginning and end, that do not go on indefinitely.
Examples:
Emotional management of these stressors can be done with self-care measures, even a little indulgent, that help relieve and regulate emotions. These ways of alleviating the effects of stressors are different for everyone, but some examples might include: meditating, deep breathing exercises, taking a nap, a bubble bath, going out with friends, eating ice cream, playing video games, watching a movie or series, etc. In essence, these are "de-stressing" or "decompressing" activities for the regulation of emotions. They are important because they help alleviate physiological reactions unleashed throughout the body: they help calm all the body's systems. They are effective short-term mechanisms whose cumulative results have great long-term benefit. In addition, once the systems calm down, we can begin to think a little more objectively.
However, it is imperative to recognize that NOT all situations are under our control or influence. There is nothing wrong with that, but different strategies must be employed to achieve resolution or deal with the aftermath. Even when acute stressors are constantly repeated, they can become chronic stressors.
Chronic stressors: external locus of control
Chronic stressors are those in which the person has NO power to control, influence or solve the situation he/she is facing. Many of them have no solution. On the other hand, those that can be solved may require an extensive and uncertain process to reach their end. Some of them may produce complex, difficult and permanent sequelae. Therefore, certain stressors that could be solved require a period of readjustment that may last months or years. Chronic stressors also include those that change a person's self-concept. They are situations or experiences that fundamentally change a person's perspective of self. When chronic stressors are a risk to well-being or are experienced on a prolonged basis, they become traumatic experiences. Traumas are characterized by adverse situations in which the person has no viable alternatives to solve or escape them. Therefore, they end up inducing a feeling of "immobility" or helplessness that lasts until after the traumatic event, especially when the person has gone through more than one traumatic experience.
Examples:
People who experience chronic stressors continuously may begin to suffer from anxiety, sadness, helplessness, helplessness, helplessness, etc. This can develop into anxiety and mood disorders which in turn affect all aspects of a person's life: psychological well-being, interpersonal relationships, and work or academic contexts. As uveitis tends to manifest itself in people who are in stages of increased work and academic productivity, their usual performance may also be affected, thus becoming an additional stressor for patients. Chronic stressors cannot be effectively managed in the same way as acute stressors. The most viable solutions are those that can be sustained over the long term and that confer proactive and adaptive measures. That is, measures that help prevent complications and manage stressors so that people can live healthy lives.
Pediatric population
Children can also be emotionally affected by the diagnosis of a chronic illness. The signs and symptoms they exhibit are different from adults and require observation by their primary caregivers. Essentially, most children still lack the ability to recognize and verbalize their emotions, especially when they first experience them. So, what they do not express verbally, they express through their behavior. They may begin to exhibit some signs such as: tantrums, changes in sleep, changes in their eating, concentration problems, isolation, new fears, anxiety, irritability, loss of interest in favorite activities, increased attachment to their caregivers, etc. In the school environment, they may begin to present academic difficulties, delays and behavioral changes in class. This could also be perceived by their teachers. Children usually turn to their primary caregivers for emotion regulation. They learn to regulate their emotions according to the example of adults and the relationship they have with them. For this reason, it is important that their primary caregivers also take care of their emotional state. If they are calm and collected, children will feel secure. Children learn about the world and themselves according to their context and close relationships. They emulate the example of the adults around them and internalize the voices of their primary caregivers. Learning about the stages of children's neurological development also helps to meet the particular psychological and emotional needs of each child.
Culturally, childhood has been idealized as a period of life without worries or real stress, but this is far from reality. Children experience stressors differently than adults. Because of their age children do not have the ability to influence their life decisions and consequences, as this falls to the primary caregivers and adults around them. This can lead to distressing emotions if some of their needs are not met. Children's needs are not only functional needs such as food, shelter, education and clothing. They also include unconditional love, respect, predictability, feeling seen and understood, time to play, the reflection of a healthy self-concept, the validation of their emotions, and so on. However, in order for all of these to be fulfilled, the fundamental need of every human being must first be met: attachment. This is what ensures the survival of all people, especially babies. It is such an important need that both children and adults resort to many mechanisms to maintain it, even when they are maladaptive. Any circumstance that threatens attachment or sense of belonging is experienced as a chronic stressor, even if it is not apparent to the adults around them. By virtue of age, children also possess qualities that give them a particular resilience that adults lose as time goes by: greater willingness to learn and assimilate new concepts. As a result, children are able to assimilate new concepts and situations quite lightly. The dynamics of the family system may also change with the diagnosis of a chronic illness in some of its members. New concerns, responsibilities and changes in time management arise that alter the usual functioning of the system. Thus, patients are not the only person affected by their illness. Each member of the family could benefit from receiving professional assistance in managing the stress involved in the changes to the family system.
Mental health care
Mental and emotional care is a very important factor in coping with stressors. These measures may not help to solve problems, but they do help to manage them adaptively. They function as buffers that prevent complications and alleviate the consequences of stressors. Socially, an avoidant attitude towards those emotions considered "negative", such as sadness or anxiety, has been normalized. Happiness, optimism and positivism have become favorite concepts that should always be manifested. However, life is full of sad and happy moments: it is a tragicomedy. It is normal that some moments are full of anguish and others are pleasant.
Optimism is not inherently negative, but when it is used to invalidate, minimize or deny the emotions of people going through difficult situations, it can become an obstacle that prevents accessibility to more adaptive measures for handling these situations. This can happen with other people and even with ourselves. Acknowledging without judgment the times when we find ourselves experiencing emotions and sensations that we find difficult to process is a good place to start. Letting these emotions "run their course" and accepting them radically (with the difficulty that comes with it) while giving ourselves the opportunity to be understanding and compassionate with ourselves helps us to cultivate wisdom and improve our state of health
Managing expectations
Managing expectations about health and uveitis allows a reasonable recovery plan to be established for each patient. If a person has expectations that are unrealistic or extremely difficult to achieve, it could lead to a lot of frustration when they are unable to meet them. The diagnosis of an inflammatory eye disease leads to lifestyle changes for patients, especially when it is chronic. The eyes are extremely delicate organs that can easily be affected by any type of inflammation. Uveitis may not only cause temporary or permanent decrease or loss of vision, but may also cause: discomfort, pain, eyestrain, sensitivity to light, etc. Therefore, even if there is NOT an active episode of inflammation, uveitis may leave sequelae that impact the quality of life of patients. It is important to qualify the course of the disease as acute, recurrent or chronic in order to develop a plan that fits the particular needs of each patient. However, inflammatory eye diseases usually take a long time to resolve, so some reasonable expectations regarding the recovery process are:
Uveitis generally has a course of increased inflammatory activity for ten to twenty years. This is a generality that describes the period of increased activity of recurrent or chronic uveitis, characterized by active episodes of inflammation separated by inactivity. These episodes vary in severity and are unpredictable, a factor that can cause uncertainty in patients. This period of increased inflammatory activity has certain complexities at the functional level since, during active episodes of inflammation, patients may not be able to function as they normally do. One solution to manage this situation is to acquire instruments, tools or strategies that serve as assistive measures for patients during periods of increased difficulty.
A reasonable expectation is that a period of at least two years should elapse without any ocular inflammatory activity for all the effects of inflammation to subside. Patients may still experience some discomfort even if they do not have active episodes of uveitis. This discomfort heals gradually over time. It is very important that patients and their loved ones take these expectations into consideration. Patients can identify what aspects of their lives are most difficult for them, what things they can do and what things they cannot do. Resilience requires interpersonal support. Therefore, if patients are surrounded by people who do not understand their illness, they will lack a context that allows their recovery and integration into society.
Radical acceptance: accepting that not everything is under our control
The acceptance process for chronic stressors is far from easy and pleasant. In fact, it is very similar to the grieving process. It is a period of physical and mental readjustment that occurs in stages, as chronic illnesses bring about changes in patients' lifestyles. Thus, people may have the feeling that their lives have fundamentally changed or that they are not the same person as before. These stages do not unfold linearly and vary in duration. Having periods of relapse does not mean that the progress made has been lost: it is part of the healing process.
Stage of denial or dissociation - Some people may be in complete denial of the situation and its emotions; while others accept it, but try to go on with their lives without anticipating all the complexities inherent in the situation. People may appear to have tolerated the news well, feel emotionally well, and continue with their lives as "if nothing has changed". They may even express that they are "fine". However, this can give rise to maladaptations because denial is an effective defense mechanism in the short term but not in the long term. It is similar to running a race with an injured ankle: you may be able to complete it, but the ankle will still remain injured and will continue to hurt.
Stage of irritability, anxiety, anger - During this stage, people are more prone to emotions such as: anger, irritability, frustration, rage, defensiveness, etc. These emotions can be caused by the primary stressor or by events unrelated to the primary stressor. That is, they can be triggered by everyday inconveniences: unforeseen events, misunderstandings, simple conflicts, etc. The reactions people have are not proportional to the events. If not properly managed, people may engage in maladaptive behaviors to alleviate their emotions: self-medication, displacement of anger, etc. In reality, it is an unconscious defense mechanism whose purpose is to safeguard one's own security in the face of situations that are perceived as threatening or radical changes. However, this mechanism ends up negatively affecting interpersonal relationships and makes it difficult for the person to receive support, especially when emotions are projected onto others. Similarly, is effective in the short-term but not in the long long-term.
Stage of dialogue, assimilation and connection - It is a stage in which "the ego calms down a little". The person assimilates the situation better. The person is more willing to face the situation, to talk without feeling defensive, to show vulnerability. He/she accepts what has happened and shows greater cooperation even if it still causes sadness or anger. This stage creates a sense of interpersonal support and allows the person to receive the necessary support.
Depression - Acceptance of a chronic stressor, such as the diagnosis of a chronic disease and its impact on lifestyle, is not easy. During this stage, the person may experience emotions such as: helplessness, hopelessness, loneliness, isolation, deep sadness, misunderstanding, etc. This is an aspect that affects all aspects of the person's life, so it is very important to seek help. In order for a person to grow emotionally, he/she first needs to feel secure in the context in which he/she finds him/herself. Therefore, it is best not to make judgments or criticisms about the process and accept it as it is.
Acceptance - During this stage, the person begins to accept his or her situation. It is characterized by the person being able to effectively articulate his or her experience, incorporating it as part of his or her life or past. At this point, the person begins to develop adaptive measures that allow him/her to live according to his/her particular needs. However, it is important to emphasize that this does NOT mean that the person never feels sadness or anxiety again, but that he/she has learned to manage them better.
Readjustment period
Self-concept, or the set of beliefs about oneself, is reinforced by the activities we perform on a daily basis. Aspects of our lives such as studies, jobs, hobbies and interests form an essential part of who we are. When a person is diagnosed with a chronic illness that disrupts his or her usual way of life, his or her self-concept gradually begins to change. It is a disconcerting change that is difficult to incorporate into anyone's life. These diseases are characterized because they require consistent management involving multiple medical appointments, medications, treatments, lifestyle changes, etc. Patients may not be able to continue with their lives in the same way, they may not spend as much time doing the activities they used to do or spending time with their loved ones because their disease does not allow them to do so. They are also unable to participate in activities appropriate to their age, which makes it difficult for them to relate relatively normally with other people, thus causing a sense of isolation and loss of independence. Chronic illnesses disrupt patients' lives and force them to implement measures that adjust to their new needs.
The decrease or loss of vision is a difficult event to assimilate. It requires a readjustment process that unfolds in stages and can last for an extended period of time. The loss of abilities and skills is one of the most profoundly life-changing experiences in any person's life, functionally and emotionally. It presents new challenges whose solutions are not immediately apparent. It is a process in which patients discover, recognize and accept that they have new needs that they did not have before. Recognizing and meeting these new needs allows patients to develop a new lifestyle that allows them to live a comfortable and healthy life.
Learning about your disease
Acquire new responsibilities regarding the management of their condition.
Develop a new lifestyle that fits the new needs of the person as a patient.
Learning new skills for the management of vision impairment or vision loss
Request vision rehabilitation services
Adjust priorities in your life: personal, professional, economic, etc.
Reduce stress
Make adjustments or change studies, jobs or careers
Identify what tasks in their life are difficult to perform and what accommodations they could implement to accomplish them.
Making adjustments to the daily routine
Make adjustments in the home to accommodate your condition
Moving close to the places where they could receive better medical care
Generally, people with chronic diseases can still perform most of the activities that are part of their lives, but with some modifications. Sometimes, this modification may only be time-related: patients can do everything they normally do even if it takes a little longer to complete their activities, tasks or goals. One reason this happens is because chronic illnesses require a lot of time to manage: medical appointments, treatments, tests and labs, etc. Another reason is the fact that both the symptoms, sequelae and side effects of treatments affect patients' quality of life. For uveitis patients, the decrease/loss of vision and the complications that could arise from immunomodulatory treatment are some of the reasons that affect their usual performance.
Time management with a chronic disease
Chronic diseases affect all aspects of patients' lives. Their proper management requires the investment of a lot of time. Symptoms, medical appointments, recovery period, tests and labs medications and their side effects, are factors that impact patients' usual performance. Patients gradually learn to reorganize their lives around these factors, sacrificing time previously devoted to their studies, jobs and personal lives. This not only has an impact on the above-mentioned aspects, but also on the patients' self-concept. They may feel isolation, incomprehension. uncertainty, helplessness, loneliness, anhedonia, loss of interest, little desire to continue their life, etc. These stressors are particularly difficult to process as they alter the self-concept.
Chronic diseases, especially when they are difficult to manage and have a detrimental impact on quality of life, are also accompanied by a period of mourning. The self-concept requires time to readjust to this new reality: patients find themselves again within their illness. Sometimes, when this becomes especially difficult, it can trigger depressive or anxiety disorders. In the absence of a context that understands the complexities of chronic illness and lacks the appropriate tools for its adaptive management, patients cannot adequately recover from their illness. Time management is a key factor for people with chronic illness and/or functional diversity. It is advisable for each person to assess how he or she might manage his or her time and illness, as there are no perfect measures for this. Recognizing that people with chronic illness and/or functional diversity experience time differently is more important than offering advice on how time should be managed. This phenomenon has been coined crip time and refers to the many complexities of time management for people who are not able-bodied. Some examples to which this term refers are:
Navigating inaccessible spaces takes longer or is impossible for a person using a wheelchair.
Navigating inaccessible spaces takes longer for a person with legal or total blindness, especially without assistance.
The self-care involved in chronic diseases requires a daily investment of time that an able-bodied person does not have to make. As a result, their time is more compromised.
Chronic diseases require time-consuming medical care
Treatments cause side effects that hinder normal function. They may cause discomfort or pain that prevents the person from working or living as usual.
Not all chronic diseases cause disability. However, this does not mean that they do not cause difficulties. A person with rheumatoid arthritis may feel greater difficulty walking long distances or using stairs when experiencing joint pain. Their walking may become slower, so meeting time-specific obligations requires more effort.
The realities of all people are very diverse. They cannot be summarized in a single list. Crip time is a difficult phenomenon to describe in a way that can represent all this diversity. To divulge a little more information regarding the experience of being a chronic uveitis patient, and to the best of my very limited knowledge, some aspects to consider for time management are:
Medical appointments take a very long time, almost a whole day.
Tests and laboratories require time. Some of them must be done fasting, so it is advisable to visit the labs in the morning.
Medical bureaucracy in countries with private healthcare systems is time-consuming
All of this affects the academic, work and personal spheres.
Recovery is not linear: there are periods of good health but other very bad periods.
Eye procedures, such as pupil dilation or eye injections, require time for vision to return to normal.
Eye injections do not work immediately. They take a period of a few days to produce their best effect and usually need to be repeated after a few months.
Medications produce side effects that also take time to manage. They may cause stomach pain, tiredness or sleepiness.
If you must inject, it is advisable to do so on days off in case of side effects
Creation of stability
Recurrent or chronic uveitis can be a destabilizing experience. Patients are forced to make adjustments to their lifestyles and routines to accommodate the new needs of their disease. However, because uveitis tends to manifest itself in unpredictable episodes, adjusting to this unpredictability is uncertain. Patients have difficulty adhering to schedules, routines or commitments because they do not know how their disease will affect them, especially when it does not respond to treatment. To buffer this uncertainty, it may be helpful to create a new routine that accommodates this new need and provides a sense of stability, to the extent possible.
Some measures that could be used are:
The creation of a strategic plan for the times when the disease produces the most severe symptoms
Creating a plan of action for times when the disease produces the most severe symptoms can help decrease stress, maintain calm and a sense of control. This plan can be developed during times when the disease is under control so that it can be executed at times when the greatest symptoms occur. It should also be communicated in advance to the appropriate people.
This plan may include:
Medical assistance: go to a medical specialist or emergency room
Established method of transportation: friend, family, trusted person, Uber® or cab
All important information regarding your health condition. This could be a chart with lab results, medications you are taking, etc.
Assistive tools for low vision
Medications to alleviate systemic symptoms
List of important contacts
Inform appropriate persons
If you usually travel long distances and stay overnight when visiting doctors or have a condition that requires hospitalization, it would be useful to keep a prepared bag with essential items. This could include: clothing, medications, personal care items(toothbrush, toothpaste, deodorant, soap, razors, etc).
Cash
Routine, organization and structure
Contingencies have the inherent quality of occurring at the most inopportune times. Creating a small routine or structure that helps to avoid or lessen contingencies can be helpful. More importantly, it helps provide a sense of structure and calm, especially for patients who must take daily medications. Some steps in creating organization and structure include:
Taking medications at the same time
Store medicines in one place
Placing pills in a weekly pillbox
Storing lab results and other important documents in a binder
Maintain a record of doses, especially of systemic corticosteroids,
Maintaining a calendar with medical appointments and important dates
Some medications can upset the stomach. Eating properly during the day can help prevent this side effect.
Limit contact with unstable and highly conflictive people
Prolonged contact with chronically unstable and/or highly conflictive individuals is detrimental to physical and mental health. These people possess characteristics that prevent them from engaging in prosocial behavior; that is, behavior that benefits everyone. They can be identified because they universally possess the following qualities: unmanaged emotions, preoccupation with blaming others, never accepting criticism, and possessing an exaggerated (all-or-nothing) thinking pattern. However, they are not always easy to identify. At first glance, they make good impressions. They are charismatic, charming and self-confident. Most are concerned about their image and strive to be "liked by others". However, as the relationship develops, their other traits begin to become more evident. They engage in a cyclical pattern of intermittent reinforcement in which a fairly stable and pleasant period of time elapses, but then becomes highly confrontational and abusive. This can be confusing and is precisely one of the reasons that keeps people in dysfunctional and abusive relationships: the hope that someday they might change or return to those "happy days." Other traits that make coexistence and relationships with these people difficult are the
following:
They may show cognitive empathy but lack affective empathy. That is, they can recognize emotions in others, but lack compassion.
They are people who show public images full of charisma, good self-esteem and self-
confidence. However, in their privacy they are insecure and supercritical of others.
They are concerned with superficially impressing others but their interpersonal relationships are poor.
They think their relationships are more personal than they really are.
They lack the capacity for introspection and the ability to see themselves for who they are. They consider themselves to be healthy, competent, good, intelligent, etc.
Exhibit persistent patterns of disregard for others
Show inability to adaptively regulate their emotions. Engage in erratic and irresponsible behavior.
They exaggeratedly criticize others but never accept criticism.
They minimize the pain they might cause others by saying things like "you have no
sense of humor, "it was just a joke", "that's not what I meant."
Treat others inconsiderately but demand to be treated well. They get upset if they are
treated the same way they treat others.
They show disproportionate emotions to everyday situations. They can explode over minor inconveniences and do not take responsibility for it.
They never take responsibility for their actions or the impact they have on others.
They can express themselves with complex vocabulary but their ideas lack depth,
They are volatile, unstable, easily bored and require sensory stimulation or diversions constantly.
They quickly become involved in affective relationships
They lack the ability to solve conflicts adaptively. They create drama and chaos unnecessarily.
They do not accept opinions different from their own.
They only surround themselves with people who allow them to continue their maladaptive patterns and who protect them from the natural consequences of their actions. They care about surrounding themselves with people who are at "their level", who can be manipulated or exploited.
They are controlling, jealous, manipulative and aggressive.
They control others by using fear, guilt and compulsion, over-emotionality, irritability, victimization, etc. They hide their need to control through displays of concern. For example, they say statements such as "I'm doing it for your own good". "I care about you", "I'm the only person who tells you the truth", "someday you'll understand", "put yourself in my place", etc.
They exploit the good qualities of others.
They lack lasting relationships, unless they are socially or culturally obligatory such as "blood family", legal agreements or work partners.
They care more about their external image than about their daily lives.
They are attracted to the ideas of marriage, the "blood" family, having children and organized religion because these are idiosyncrasies that allow them to abuse others without repercussions or easy abandonment.
They are attracted to hierarchical and power ideologies.
Their priorities are often banal. Their public image and economic success is often more important than situations that require more maturity and responsibility.
They have no boundaries and do not respect the boundaries of others.
They get offended and upset if you set limits for them. They might say things like "we are family". "I love you",. "no one loves you like me", "true love has no boundaries", etc.
His actions do not match his words.
They put the safety of others at risk.
They may be financially successful, but can only relate interpersonally on a functional level. They lack the ability to form deep, compassionate, empathetic and satisfying interpersonal relationships.
They get upset when they are not the center of attention. They show sarcasm, offend others and turn conversations back to them.
They may dress provocatively or inappropriately at various events.
They are concerned about keeping many secrets, especially those things that go against their idealized image and cause them embarrassment.
They could have problems with alcoholism, drug addiction, sexual compulsions, etc. It is a way of trying to regulate their emotions.
They think that everyone around them is to blame except them. They victimize themselves so as not to take responsibility for the consequences of their actions.
They never apologize. If they do, it is an insincere apology and usually for the purpose of remedying the inconvenience caused by other people's discomfort.
Conventional conflict resolution tools ARE NOT EFFECTIVE with these people.
There are not bad people, but disorders and maladaptions. People with these traits lack the capacity to create and maintain healthy interpersonal relationships. Most abusive people come from abusive and dysfunctional backgrounds, but this does not justify the abuse they perpetuate. Furthermore, it is never the victim's responsibility to empathize with his or her abuser. Staying around people with these qualities is detrimental to physical and mental health, as well as being extremely risky.
Abuse is not always overt. It can be perpetrated by commission or omission. It develops insidiously and victims end up doubting their experience and reality. They are manipulated to feel guilty, responsible and ashamed for being abused. On top of that, they are expected to behave in a socially acceptable way, to report what happened even when they lack support and their safety could be threatened, and to fulfill the stereotypical role of victimization and grief. Otherwise, their credibility is questioned
Introspection and intuition
The process of introspection allows us to recognize who we are, what aspects we wish to improve and what others bring us satisfaction. It is a good exercise to create within ourselves a healthy and safe space that allows us to cultivate our authenticity. Sincerely recognizing who we are, reconnecting with our body and emotions, allows us to learn how to conduct ourselves in our lives. It allows us to create a sense of security and peace, but it also gives us the most valuable information: the validation of our reality.
Any adverse situation that requires a readjustment process, such as the diagnosis of a chronic disease, places us in a vulnerable position. These are painful and uncertain situations. Ironically, they are also great opportunities to learn and grow. However, this cannot happen without first feeling that we are in a safe and comforting space. Therefore, creating this inner space where we are non-judgmental and non-critical of our experiences and emotions offers us the opportunity to know ourselves and honor who we are. Life is a continuous process of growth and learning.
Learn to set limits/boundaries and say "no"
The current historical and socioeconomic context has normalized dehumanizing conditions that go unchallenged. Many people struggle daily with discrimination, poverty, violence, war, family dysfunction, self-medication, among countless other problems. In reality, they all have one thing in common: the inability to engage in prosocial behavior, violence has historically been a revered quality, but deep down it is only the most concrete manifestation of our primitiveness. It is easy to hide behind ideologies that only serve self- interest, that propagate violence and oppression of others. Thus no one ends up being responsible for the problem: it is just part of the unquestioned and self-sufficient status quo.
Thus, for a very long time, and in three different species, the game has remained essentially the same; only the scoring and the uniforms have changed. For man, for chimpanzee and for baboon the problem of life is still largely the problem of getting along with one's fellows in a group.
Maitland A. Edey (The missing link)
Meditation
Meditation has a wide variety of benefits and does not require instruments to perform it. It is free, simple and effective. Its benefits are immediately noticeable and increase when practiced daily. So it can be used as a measure to help manage acute and chronic stressors. There are many types of meditations that you can find on websites such as Youtube®, Spotify® or excelatlife.com. Some of them are:
MBSR Meditation
Guided meditation
Meditation with movement
Meditation with mantras
Breathing-based meditation: deep breathing meditation, guided breathing meditation
Mindfulness
Guided imagery
ASMR
Progressive muscle relaxation
Breathing exercises - focus on exhalation to promote the release of acetylcholine and
stimulate the parasympathetic nervous system.
Positive affirmations
Meditation is not about being absolutely at peace but about learning to maintain peace in the face of adversity. It may be difficult at first, but the difficulty diminishes with practice. It is a skill that improves with practice but is never perfected.
On the other hand, if you feel you would prefer a more energetic activity, you can do physical activities. They are equally effective. You could do physical activity when your disease is under control and meditate when you experience symptoms.
Releasing repressed emotions through writing and creating a narrative
Writing is a good activity that is often recommended by psychologists as a complement to therapeutic sessions. It helps to keep the mind clearer and not get overwhelmed with distressing emotions. It serves initially as an outlet but also helps to think more calmly and generate good ideas. It is a useful tool for releasing emotions that have been repressed and increasing "positive" emotions. Releasing emotions that have been repressed over time is extremely important for people who are in their healing process since the effects of stress are cumulative in the body: the body is the unconscious. It is normal that when people repress emotions, they manifest in the body in multiple ways: sleep problems, cardiovascular problems, gastrointestinal problems, etc. When this is done for a prolonged period of time, it can have detrimental effects on the body and cause disease. It is not a direct cause but a correlation that predisposes to the development of physical and emotional health complications. Therefore, the release of repressed emotions is a key aspect of healing.
Diary
Letters (you do not have to send them)
Creative Writing
Develop your sense of purpose: short-term goals and long-term goals
Uveitis can be a destabilizing disease because the unpredictability of inflammatory episodes means that patients may not always be able to keep to a schedule. So perhaps the goals that might be set are not future-oriented but present-oriented. Goals that a chronically ill person might have might be "day-to-day" based: take their medications, meditate for ten minutes, eat properly, etc. For many chronic illness patients, visualizing a future of their own may be unrealistic, as they recognize that their illness may get in the way of their plans. Still, keeping a set of goals based on the present and the recovery process is a good way to create a sense of satisfaction, progress and cultivate the skill of mindfulness.
On the other hand, setting long-term goals is just as beneficial for people who wish to do so. It helps to maintain a sense of direction and motivation toward the future. Regardless of societal goals and expectations, what is important for each person is that he or she can develop his or her unique sense of purpose. Also, do not succumb to overvaluing productivity. It is not necessary to set goals to be productive in capitalist terms. When you have a chronic illness, getting out of bed and taking a shower are revolutionary acts.
The art of saying no
Saying "no" and setting limits for others is only half the job. For many, it's not enough to just do it, but we need the conviction and peace of mind it takes to keep it up. In a society that overvalues productivity, work, monetizing hobbies and creating multiple incomes, taking a break is highly stigmatized. It has been inculcated in us. So refusing to participate in these cycles, even when our bodies require it, is a tremendous "internal struggle". We always want to be a little more productive, to finish something before bedtime, to fulfill social and work obligations... to the detriment of our health.
Recognize what your limits are: what you accept and what you do not. If someone oversteps your boundaries or does not respect them, do not be afraid of the anger that may arise. Don't repress it, but don't do violence either. Listen to your anger because it is trying to communicate a message to you.
Make fewer commitments
Learn how to say "no" without feeling bad
Relinquish your responsibilities to others
Don't sacrifice your recovery for productivity
Establish a routine to sleep peacefully every night
Support network
A strong support network is essential for anyone, especially when going through difficult situations. It is beneficial for patients with chronic illnesses because it not only helps to process the stressors of their illness but also confers resilience in the face of adverse life circumstances. Resilience cannot exist without interpersonal support: we are a social species.
Support groups
Activities focused on synchronicity: theater, dance, choir, parrandas, church, sports, crossfit, music, spiritual retreats, group yoga, etc.
Friends and family
Two fundamental needs of human beings are: authenticity and attachment. The authenticity to be who you want but also to form emotional bonds that produce a sense of belonging. When one or the other is threatened, it produces extremely painful emotions and chronic stress. The sense of belonging, togetherness and interpersonal support confers resilience because our survival depends on it; but when it is threatened by the authenticity of being yourself, it produces anguish and chronic stress. Therefore, surrounding oneself with people who have the capacity to accept and honor each person's authenticity helps to decrease stress levels and provides resilience to face life's adversities.
Psychological and/or psychiatric help
Psychological and/or psychiatric therapy is a very good tool for the mental health care of chronically ill patients. Integrating the diagnosis of a chronic illness is a difficult process for any person. It is a situation with several complexities tied to the healing process that can be appropriately guided by a professional. Far from being a resource for "crazy" patients, therapy offers a safe space for patients to experience their emotions without prejudice. It helps people continue to cultivate their good qualities and develop skills that allow them to handle adverse situations appropriately.
There are different types of therapies to suit the tastes and needs of each patient.
Psychodynamics
Cognitive-behavioral
Dialectical-behavioral
Humanistic
Psychiatry
Anyone can greatly benefit from receiving therapeutic help from a trained professional. Therapy is the best way to deal with situations that require a complex healing process. Seeking psychological help is a sign of courage and good health. Some signs that might indicate that seeking psychological help would be of great benefit are:
Emotions such as sadness, fear, stress, helplessness or anxiety make it difficult to go on with life as usual. These emotions may not even affect normal functioning, but they do affect the emotional and personal domains. The person may be able to fulfill his or her responsibilities, but still feel considerable sadness and anxiety
You are afraid or anxious about losing your vision. You present difficulties to accept and assimilate the diagnosis.
Development of apathy, anhedonia or fatigue resulting in social isolation. The person "feels bad because they feel sad," believes they "shouldn't feel the way they feel," believes they cannot achieve their goals, or is more likely to become frustrated.
Emergence of problems in the personal, interpersonal, academic or work environment. A problem in one area of life can trigger problems in others. For example, a problem in the work environment can also cause problems in interpersonal relationships. A health problem can cause problems in any other area of life, such as work or school.
Development of self-destructive behaviors or mechanisms to relieve emotions. These may disrupt the person's normal continuum or may be high-risk activities. Examples: self- medication with alcohol, marijuana or other drugs; engaging in high-risk activities such as speeding;
Difficulty in regulating emotions. Emotional reactions arise that are disproportionate to the events that provoke them.
Difficulty in continuing studies or work. Loss of motivation and interest.
Difficulty in creating and maintaining interpersonal relationships.
You have tried to implement changes but they have not worked
Increased propensity to develop anger, irritability, aggression, self-criticism, catastrophic thoughts or idealization of suicide.
Emergence of avoidance behaviors, avoidance of loneliness, lack of assertiveness, etc.
Having gone through traumatic or high-stress situations. Examples: abuse, natural disasters, death of loved ones, violence, family dysfunction, marital problems, work or academic problems, diagnosis of chronic or degenerative disease, any type of trauma
Desire to go to therapy (regardless of circumstances or severity of symptoms)
Physical care
Rest
Adequate rest is the most important factor in recovery from any illness. However, this is also not so easy for people with chronic diseases that produce a lot of fatigue, such as almost all autoimmune diseases. Feeling tired is no longer a bodily indicator of when you need to take a break: exhaustion is present almost all the time.
Feeling tired is normal. It happens to all of us. However, the fatigue associated with autoimmune diseases is very particular since it does NOT usually improve with rest and is disproportionate to the activities performed. People report feeling tired even after having slept adequately or exhausted after finishing tasks that they were able to do normally before.
Tiredness, fatigue or exhaustion associated with autoimmune diseases still remains an uncertain challenge for the medical community. It is associated with some properly medicalized diseases such as fibromyalgia, hypothyroidism, depression, narcolepsy or chronic fatigue syndrome. On the other hand, it is also associated with other causes that have not been medicalized such as HPA-axis (hypothalamic-pituitary-adrenal) dysfunction, adrenal fatigue and chronic stress.
This situation is complex to manage. It would be helpful for each patient to perform a life assessment that includes the following:
Identify the activities that are most difficult for them
Make some adjustments in your routine to get more rest: create a bedtime routine, stop using electronic devices one hour before going to bed, always go to sleep at the same time. etc.
Do not consume excessive caffeine and/or stimulants.
Identify what their personal limits are: which tasks they can perform without problems and which ones they cannot.
Extroversion: recreational activities and hobbies
A chronic illness impairs the ability of patients to engage in some favorite pastimes in the same way as they did before. Lifestyle changes due to chronic illness are a difficult aspect to accept. Therefore, it is important to cultivate hobbies that can be pursued during times when the disease "kicks in" and the most difficult symptoms are experienced. Some of these include: mild/moderate physical activity, listening to music, meditating, yoga, watching Netflix®, painting, playing board games, spending time in nature, getting some sun etc. Make time to rest and have fun without feelings of guilt. Recreational activities and hobbies encourage creativity and decrease pent-up tension.
Physical activity
Physical activity is an integral part of maintaining good physical and mental health. It helps reduce stress levels, provides a sense of well-being and energy. It is not necessary to become a professional athlete or go to the gym every day. Mild to moderate walking three times a week is sufficient. On the other hand, emphasizing physical activity based on rhythmicity, coordination and body sensations greatly helps to "reconnect" with the body and calm anxiety. A particular benefit of these exercises is that you don't need to leave your home or go to a gym to do them, and they require little or no equipment. Examples include: yoga, dance, aerobics, jumping jacks and exercises using your body weight.
Some exercises you could do are:
Cardiovascular:
Walking
Jogging
Running
Going up and down stairs
Jumping rope
Dance
Aerobics
Swimming
Cleaning the house
Musculoskeletal:
You can use your body weight to perform resistance and/or strength exercises. You could also use weights. These exercises include:
Push-ups
Squats
Abs
Flexibility exercises
If you feel a lot of adrenaline and feel like exercising, it is better to do moderate/high physical activity and meditation when you want something light.
Eating habits
Diet is an important aspect of overall health care. Individuals with a condition or allergy that requires a special diet may benefit from a consultation with a nutritionist. Otherwise, people who do not have a condition that requires a special diet may benefit from the following general concepts:
Eat a balanced but not restrictive diet.
Developing a good relationship with food
Establishing good eating habits
Enjoying the food
Eating slowly and leisurely
Do not skip meals
Consume snacks between meals
Drink water frequently during the day
Consume more unprocessed foods than processed foods.
Cooking more often at home
Limit consumption of cow's milk
Limit consumption of fried foods
Limit consumption of red meat
Include adequate portions of fruits and vegetables
Include sources of fiber, such as vegetables and oatmeal
Limit the amount of alcohol
Limit consumption of stimulants such as caffeine or sugar
People who are not used to eating daily portions of fruits and vegetables could start making
smoothies at home. Fruit and vegetable smoothies allow these portions to be consumed quickly.
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