Uveitis: an invisible illness

There are many illnesses, both physical and mental, that make life difficult for the people who suffer from them, both because of the severity of the symptoms they produce and the complexity of the treatments. There are certain diseases and physical symptoms that can cause symptoms that are easy to spot, such as breathing difficulties or external bleeding. Invisible illnesses, however, are those that do not produce symptoms that are easily noticeable to others. This type of illness unleashes a certain social phenomenon, so to speak, that makes life difficult for the patients who suffer from it. Particularly, the obstacles that a person with an invisible illness faces come from the stereotypical image of a "sick" person. The stereotypes created in society around diseases have fed a series of misconceptions about what is considered a good state of health or, conversely, a sick person. This has caused the creation of prejudice and discrimination against anyone who is not part of the normalized idea of what it means to be "healthy", "normal" or "sick" Furthermore, despite the laws and measures that exist to prevent discrimination against people with functional diversity, unfortunately we still live in a society in which this type of discrimination, coined as ableism, is manifested on a daily basis.

Ableism is just one of the many types of discrimination that are sadly still part of our society. It is both ideological, material and institutional: it is produced through ideas that propagate inequality, impede material accessibility to people with functional diversity and is cemented through almost all institutions today. The creation of prejudice and stigma against people with functional diversity is based on the hegemonic idea that there is a norm and an otherness, dichotomous perspective that is typical of Western history and that has caused so many problems throughout history. Consequently, "personhood" is not naturally granted to people who are diversely functional and is never even recognized. Lack of media visibility, lack of available resources that fit everyone's needs, and lack of social legitimacy are just some of the ways that ableism manifests itself. It is an unequal power dynamic for people with functional diversity.

Not all cases of functional diversity are the same. They all depend on many factors, such as the degree of severity in a particular case. This term includes what was previously known as impairments and disabilities, thus incorporating two nouns alluding to the degree of severity. Now, the types of functional diversity are grouped as: motor, intellectual, auditory and visual. These manifest themselves in different ways in all people, so no two cases are ever the same. It is impossible to define everyone's reality in a single universally representative idea and it would also be reductive to do so since diversity is a quality more congruent with reality. One of these gray areas for uveitis patients is in terms of fluctuations in vision. Vision is usually reduced during active episodes of inflammation, but returns, sometimes only partially, when the inflammation is brought under control. Thus, not all patients have permanent vision loss or are legally or totally blind. Many of us find ourselves in this gray zone where we sometimes experience low vision when uveitis becomes active, sometimes very severely, but we manage to recover with appropriate treatments. However, there are cases in which the inflammation could affect certain essential structures of the eye and permanently compromise the patient's vision. We may even develop cataract or secondary glaucoma as a side effect of the treatments. This highly variable and unstable gray area can be very overwhelming, especially when uveitis is chronic, as the sudden impairment in vision affects our ability to carry out activities we can normally do without problems. Being part of a society based on production, consumption, efficiency and speed when you have a health condition that hinders this also becomes a political and economic issue.

Uveitis is considered an invisible illness when it does not produce symptoms easily visible to others, such as redness of the eyes. For this reason, uveitis patients, like anyone with any other invisible illness, face a particular set of difficulties, especially when it is recurrent or chronic. Symptoms make it difficult to carry out daily tasks since they reduce visual acuity and, consequently, affect personal, academic and work environments. Likewise, treatments may produce a number of side effects and complications that also impact our lives. While we can get medical assistance to manage the symptoms and side effects, there are other difficulties we face on a daily basis that are not often openly talked about.

Humans are social organisms: we construct our reality through socialization. Therefore, we cannot separate the fact that the physical symptoms of an illness are in turn accompanied by emotional reactions: it is NORMAL. The mind cannot be separated from the body, nor the body from the mind. The medical interpretation of any disease is a product of our socialization. For this reason, if an illness hinders the physical function of the body, it also hinders our social interactions with others, mainly due to the phenomenon of ableism. We are all capable of reaching our full potential and our personhood is not dependent on any extrinsic factor: sex, gender, ethnicity, race, socioeconomic status, age, neurodivergence, sexual orientation, immunity status, education level, culture, functional diversity, etc. Our humanity is inherent. However, the current heteropatriarchal and capitalist context is sustained through hierarchical power structures based on political and economic oppression of any identity that is not hegemonic (male, cisgender, heterosexual, white, Caucasian, bourgeois, neurotypical, able-bodied). The current social organization is sustained by inequality and oppression of dissident identities. That is why there are discriminatory ideologies and doctrines such as sexism, racism and able-bodiedness. As a result of the latter, the following difficulties arise that uveitis patients may face:

Nobody understands

Uveitis is an unusual disease that many people are unaware of. Therefore, when we talk about our disease, we may encounter people who have never heard of uveitis and lack the understanding necessary to provide adequate support. At times, initially harmless comments or microaggressions can be very distasteful and disempowering. As a result, we may feel frustrated, rejected and misunderstood. Due to the relatively low prevalence of uveitis, we also most likely do not know other people who have been diagnosed and thus may feel even more alone during this process. The biggest difficulty we face as a result of the lack of knowledge about uveitis is the lack of adequate help available.

Pathology and rejection

Lack of knowledge about a disease can result in prejudice, marginalization and discrimination. Coping with this is very hard and it takes time to learn to deal with the negative reactions that other people may have. These include making insulting remarks, misunderstanding, discrimination, prejudice, lack of empathy, isolation, pathologization, fear, etc. These experiences are extremely distressing and impact all aspects of our lives, as they make it difficult to continue normal daily activities and form healthy interpersonal relationships. Consequently, we may begin to feel many emotions that we may be experiencing for the first time within this context: frustration, unmotivation, incomprehension, loneliness, confusion, among others. The relationship we have with ourselves and with others changes. Naturally, facing a recurrent or chronic illness makes us rethink many aspects of our lives and make adjustments to our own.

Invalidation and marginalization

The greatest difficulty of ableism is invalidation, since it manifests itself in so many ways. It would be almost impossible to synthesize all the disabling situations and ungrateful events that all of us with invisible illnesses have encountered. I do not pretend to be a unique reflection of such a diverse community, I only intend to create a space where these experiences can be openly discussed and all people feel welcome to collaborate.

a) The credibility of people with invisible illnesses is often questioned because the symptoms are not easily perceived. Unless there is redness of the eyes or atrophy of the iris, most symptoms of uveitis are imperceptible to others. Many of us can look completely fine, lead "healthy lifestyles" and still have enough vision to continue to perform our daily tasks. On the other hand, symptoms are not always present as recurrent or chronic uveitis becomes active and inactive without warning. In fact, the severity of symptoms fluctuates and we do not always present the same symptoms in each inflammatory episode. The unpredictability of inflammatory episodes and the inconsistency of symptoms are among the aspects that make living with uveitis particularly difficult.

b) Questioning the legitimacy of any illness in turn makes it difficult for a person to receive appropriate help and limits the possibility of implementing measures that allow them to continue with their lifestyles, according to their particular needs. For example, a chronic illness, apart from the extremely uncomfortable symptoms it causes, entails regular medical visits. If a teacher does not understand the nature of a student's chronic and/or invisible illness, it may make it difficult for the teacher to meet the course evaluation criteria. Another example is penalizing employees for absences due to illness. In addition, postponement or denial of appropriate medical help may occur in cases where physicians lack knowledge about the disease and its clinical manifestations. This is of great risk since the eyes are made of a lot of extremely delicate tissue that could end up being irreparably damaged and thus compromising the patient's vision.

The low prevalence of rare diseases is a factor that does not encourage the development of new resources dedicated to patients. Private health care companies do not consider rare diseases as a lucrative market and, therefore, do not invest money in projects such as clinical research, formal training of healthcare professionals or development of new drugs. These diseases end up being coined as "orphans" and also produce other problems in the lives of the patients who suffer from them. These could be the total medical dismissal of the case and consequently the denial of available resources that could help patients (treatments, medications, education, self-management tools, support groups, financial aid, etc.); as well as complete social marginalization, since measures have not yet been developed to allow proactive management of cases that choose to be ignored.

It is important to note that chronic illnesses require different management than acute illnesses, as they are often persistent, severe, prolonged and changing. Therefore, respecting the needs of any person with a chronic, invisible illness or any type of functional diversity is vital. This can be achieved by first listening to the person and implementing measures that can assist him or her. You cannot judge a person's health condition by their appearance.

What can we do about it?

The personal is political and the political is personal. Ableism is an ideology that justifies that people with functional diversity or chronic illnesses lose our jobs, are denied educational and employment opportunities, do not have access to resources we need, are made invisible, pathologized and stigmatized. Sometimes it is impossible to afford all medical expenses, we do not have access to the medical care we need, we must incur additional expenses and work twice as hard to survive. There is no respect for our privacy, personal space, autonomy or agency. It is a systemic, collective and social power dynamic that oppresses the existence of any body that is not hegemonic.

My intention is never to impose my perspective or tell anyone what to do. I am also learning and unlearning every day. It is a continuous work that has no end. I don't have the ministry of anything, but I can share what I have been learning so that people who are interested can also "make it their own" and reach their own conclusions. Learning to stand up for ourselves and advocate for our rights in the face of a system that discriminates against us is hard and complex work, but it can save someone's life and it can help us make better decisions. Life already has enough difficulties, oppressive and discriminatory structures without a person diagnosed with a chronic illness, invisible or functional diversity having to face more of them. Any illness places us in a very vulnerable position because our wellbeing and survival depends on the decisions made by an external collective, even more so nowadays where the doctor-patient relationship is excessively paternalistic. If this collective lacks a comprehensive understanding of the disease as an individual and social circumstances or their individual interests are more important than public health, it leads to dire situations. Medicine should be at the service of the people and should not be used as another instrument of oppression.

"When you know better, you do better" - Maya Angelou

Learning as much as we can about our disease and communicating assertively is the first step in combating ableism. In addition, speaking openly and being willing to explain to others about our disease can serve to raise awareness about it. It is not our obligation to educate anyone or divulge personal details, but adopting a new attitude by practicing empathy and keeping in mind the fact that it is very complex information could be of great help to us and others. The only thing we can control are our thoughts and behaviors. Therefore, adaptively managing the negative thoughts and emotions that might arise from the difficult situations we are dealing with should be our priority. In this way, we can begin to create mutually pleasant and beneficial interpersonal

relationships.

Identifying and recognizing the tasks that are most difficult for us to perform in our personal, academic and work environments allow us to develop measures that best suit our needs. Communicating honestly and respectfully is a fact of life for us. On the other hand, the position that others take in this regard is not a reflection of us. It is not our responsibility to make anyone understand our life experience. If we find ourselves in situations where our particular needs are not being respected, we should take other actions as appropriate, while remaining calm. Communicating our needs is important, but it is also crucial to learn how to handle situations in which they are compromised. If this happens continuously, we must accept it and withdraw from such situations. If we deem it necessary, we may report them to the appropriate persons and/or authorities.

Finally, cultivating healthy interpersonal relationships is an extremely important measure in any case, but especially when we face difficult situations, such as a chronic or invisible illness. Empathy, solidarity, understanding, respect and mutual support are virtues that benefit our relationships. Having people we love can help us overcome any difficult situation, always reciprocating all the love we receive.