Testimony of a patient, her struggle, voice and recommendations, with the invitation that as a community we talk regarding this type of health adversity.
Lorna García, Hidradenitis Suppurativa patient. Photo: Archive of the Journal of Medicine and Public Health. Fabiola Plaza.
live with one chronic illness It is an unfavorable situation for anyone, which can limit daily life, this is the scenario of many patients with Hidradenitis Supurativapainful skin disease that commonly creates bumps in parts where there is friction or friction, the inflammation of these, generate abscesses that cause a lot of pain, which generally drain suppurations.
In the case of Lorna García, a patient with this skin condition, she lives with moderate/severe symptoms, depending on how they present themselves; she narrates it like this, “The condition is chronic, it is very painful, it tends to form abscesses all the time, it is draining, it limits movement, it can affect a lot in the work area.”
She, despite her condition, faces the day to day with the best attitude, being a voice of support and above all being one of the faces of this condition, opening spaces for others to recognize themselves in her and thus be able to have a little guide vs. How to minimize the impact that this disease causes in their lives?
“Educate ourselves and educate all those who can, we need to get involved, give their testimonies, raise our voices, we are going to achieve much more treatments and access” These are the invitations made by García, who has learned, learns and seeks to understand the procedure like thousands of patients regarding their work life, especially dealing with this disease, despite the fact that on many occasions this is a limitation or a disruptor in work processes.
But faced with this situation, patients have the responsibility to understand and talk to employers, to open up to dialogue so that reasonable accommodations are defined that allow both patients and employers to have facilities for participation and action, understanding that sometimes the worker who suffers Hidradenitis Supurativayou will have to restrict yourself from appearing at the office or from being able to carry out certain activities depending on the case or episode you are experiencing, also depending on the level of symptoms you present, whether mild, moderate or severe.
How to deal with the employer’s reaction?
“The documentation that my dermatologist presented helped me, and it helped me to know my condition and educate my employer, little by little, achieving that accommodation” says Lorna, in addition to this, one must be responsible in knowing how limited I am in front of my work? As a patient, you will be able to understand at what times she will have to request leaves of absence, to attend medical appointments or what conditions her workspace must have to allow her to carry out her work without affecting the flow of processes.
Lorna, recommends in the case of the academic field “that students be registered in the special education system, under health circumstances” that will allow students to be protected, especially from the reception they will have within the education system. in general, likewise achieve reasonable accommodations and additional rights that protect or certify a healthy study space for the patient.
Knowing the legislation, having at hand all the documentation given by doctors or dermatologists, documenting each approach you have in job requests for accommodations, knowing your body and looking for tools that allow you to perform in your daily spaces, without becoming overwhelmed is a challenge quite large with which these patients live; in addition to all the emotional burden that a dermatological condition brings.
For this reason, it is also the responsibility of the community to be a support network and guarantee spaces for dialogue and education on issues like this, for which we invite you to be participants and actants.
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