Uveitis is a complex disease that impacts different aspects of the lives of people who suffer from it. You probably have never heard of uveitis before and you probably don't know anyone who has experienced eye inflammation. You may not know what to do or how to handle the situation since it all came on suddenly. There may be a thousand thoughts running through your mind, your heart is racing, it's hard to eat or sleep, your muscles are tense... It's something that has happened to many of us who have been diagnosed with uveitis or to parents whose children have been diagnosed with uveitis. You are not alone during this process and everything you experience is completely normal.
Uveitis is a disease that in turn has a particular emotional impact. Both uveitis and its management have stressors that trigger emotions that are difficult to process. The symptoms of uveitis are the first stressor that patients experience during this process. All the symptoms of ocular inflammation are serious, but the sudden decrease or loss of vision causes extremely distressing emotions. Any emotion that arises during this process is valid and normal: confusion, fear, dread, frustration, worry, anxiety, courage, sadness, helplessness, stress, uncertainty, vulnerability, misunderstanding, loneliness, etc. There is no right or wrong way to react to a situation like this. On the other hand, receiving a diagnosis of uveitis could be a bittersweet event. You might feel satisfaction because you finally know the reason for your symptoms, but you might still have more doubts or concerns. The third stressor, to top it all off, is the management of uveitis. Not all cases are the same, but those patients whose cases require extensive and thorough management may experience the previously mentioned emotions for a longer period of time. It is not easy to go through multiple tests, labs, treatments and attend so many medical appointments. Finally, the symptoms and complications of uveitis change both the patient's lifestyle and quality of life. When faced with all these stressors, the emotional impact of ocular inflammation is exacerbated. Uveitis is a disease that requires time, patience, understanding and compassion. It involves an emotional process of readjustment to a new reality. Sometimes it is gradual and non-linear, which can lead to confusion and frustration. Sometimes it is quicker and simpler. It is different for each patient. Therefore, while we take steps to take care of our health as uveitis patients, it is also important to take care of our mental health. Some steps we can take during this process are:
Taking proper care of your physical health
Staying on top of our medical appointments and treatments is imperative. Managing the symptoms of uveitis, especially when it has become recurrent or chronic, can be very difficult. At times, we may feel fear or frustration when uveitis does not respond well to treatment or when the side effects are very strong and uncomfortable. Therefore, it is vital to discuss all physical manifestations with your physicians, both symptoms and side effects. If the uveitis is caused by a systemic autoimmune disease, it is extremely important to take care of this condition. Seeking appropriate medical care to take care of our physical health will consequently allow us to take better care of our mental health.
Taking care of your mental and emotional state
Process all your emotions because they are all valid and important. Emotions are energy in motion: they come and go. Some are stronger than others, some last longer than others. You could use the following steps to process your emotional state:
Recognize your emotions
Recognizing our emotions is the first step to take care of our mental health. It is very important to take this step with sincerity and compassion, without judging ourselves mercilessly. Pay attention to your emotions and their possible physical manifestations, such as: muscle tension, headaches, gastrointestinal problems, sleeping difficulties, etc. Emotions have three components:
a) Subjective- refers to what we feel internally.
b) Physiological - includes bodily manifestations
c) Expressive - the outward manifestation of our emotions
Validate your own emotions and experiences
Emotions are trying to communicate messages to us. For example, if we feel anxious or worried, it is because we are dealing with something that is important to us. If we feel relaxed, it is most likely because we are in a safe and pleasant environment. Emotions have an adaptive evolutionary function: they help us to survive. Charles Darwin theorized that our sense of purpose involves both emotions and actions: our emotions motivate us to take action. Therefore accept emotions on their own, without judgment, and use them as a guide to manage the situation. If you feel worried, express all your doubts to your doctors.
Process your emotions
There is a wide variety of exercises to process and manage our emotions. Some of these are: breathing exercises, progressive muscle relaxation, instrumental music, mindfulness, meditations, writing, physical activity, yoga, etc. The important thing is to develop adaptive mechanisms to deal with difficult and distressing emotions in a healthy way. None is especially better than another, so experiment with different mechanisms, choose the ones you like best and put them into practice. Watching series or movies, listening to music or eating ice cream are also valid ways to process emotions.
The symptoms of uveitis and the side effects of the treatments impact the daily life of patients, even more so if there is a systemic disease involved. Therefore, making certain adjustments to daily life could facilitate the way we cope with this situation. Some of the adjustments we can make are: eating a balanced diet, being physically active, reducing stress levels, getting plenty of rest, staying productive during the hours of the day when it is clearer (or vice versa). In addition, it is very important to cultivate healthy interpersonal relationships based on honest communication and mutual respect. Most people are willing to help if we ask assertively and respectfully. Making the necessary adjustments in the work and academic environment is essential in order to be able to continue with our responsibilities. Identifying and discussing the tasks that are most difficult for us and the accommodations that can be implemented is not only a right we all have, but it is also a good start to feeling better in the work or academic environment. It is our responsibility as uveitis patients to recognize the tasks that are difficult to perform, implement alternatives and communicate them assertively. We cannot control other people's reactions: there will be those who will understand and others who will not. The important thing is to recognize the aspects of our lives that are affected by our condition, communicate our limits or boundaries forcefully and implement alternatives that are appropriate for us. Learning to feel good about oneself is a complex and slow process, but a very important and rewarding one.
Other adjustments related to impaired vision can be found in the following articles:
Managing vision impairment
Prevention tips for immunosuppressed patients
Simple tips to reduce eye strain
Accommodations in the work or academic environment for visually impaired people
Psychological and emotional management of uveitis
Seek help
Seeking help is a sign of courage, strength and health. True resilience does not exist without community support. Interpersonal support is an essential aspect for all human beings. Therefore, asking for help when we need it can greatly improve our quality of life and healing process. There are many alternatives and resources that can provide us with the kind of help we need. Friends, family members, mentors, therapists, associations, support groups, our community, your church, etc. It is very important to communicate honestly, explain our feelings and specify what we need respectfully. Most people are willing to offer help when asked for it. Finally, there are many mental health professionals who offer support and tools for coping with chronic illness. Psychological help could be of great benefit in situations like this and always gives us the opportunity to continue to grow healthily. New challenges can arise when uveitis is recurrent or chronic. Adapting to new health conditions is a highly complex process unique to each patient. The adjustments that come with chronic disease, both in terms of the symptoms it causes and its particular care, have a direct impact on our quality of life. The decrease or loss of vision, the complexity of medical care and the side effects of treatments are some of the major stressors for uveitis patients. Many difficult-to-process emotions surface: frustration, isolation, sadness, helplessness, fear, anxiety, etc. Our self-concept and self-esteem is reinforced through the activities we perform on a daily basis. That is why receiving a diagnosis of a chronic disease, which changes our daily life, has such a strong emotional impact. It is no longer just an external stressor with a beginning and an end, but has become an immutable reality that disrupts every aspect of our lives. Our body has become the stressor. This changes our fundamental way of perceiving life, of relating to our body, the people around us and our environment.
Most treatments for uveitis are prolonged, produce unpleasant side effects and require responsible patient management. Adherence to treatment, correct dosing and implementing measures to prevent the development of complications are all part of the healing process. But even with our best intentions, discipline and optimism, this new reality can slowly undermine our attempts to stay positive and in good spirits. Not least of all. It is extremely difficult to attend so many medical appointments, take so many medications, injections, blood tests, exams, suffer through the symptoms, readjust to new needs and try to get on with our lives.
It is no surprise that patients with chronic diseases also experience symptoms of depression and anxiety. This is nothing more than the mental mechanism to keep our body alive. They are part of a normal reaction to a difficult and strange situation. This does not mean that patients are less resilient or strong. On the contrary, it takes a lot of courage and bravery to face life, whatever the situation.
This strange period between birth and death is difficult and painful for everyone. No situation is worse than any other. They all carry different complexities that change according to the context. Therefore, there is no right or wrong way to heal. It is a unique process for each person.
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