Eu sofri de fibromialgia por seis anos. Até hoje não tenho certeza do que acho mais difícil; a dor constante, a fadiga e a miríade de outros sintomas que acompanham o diagnóstico, ou a constante necessidade de explicá-lo e justificá-lo.
Em 2010, quando fui diagnosticado, foi por processo de eliminação. Eu fiz vários testes e exames sem conclusão, e um dia eu perguntei ao meu médico se eu poderia ter fibromialgia, depois de ler sobre isso online.
Tenho certeza de que o autodiagnóstico na internet é a única coisa que todos os GPs não recomendam fazer, mas aqui estava acontecendo. Fui encaminhada a um reumatologista que confirmou o meu diagnóstico depois de completar o teste do ponto sensível, e por um momento senti alívio.
Mas essa consulta tornou-se uma das muitas conversas frustrantes com médicos que não acreditavam ou não entendiam minha dor. Aquele reumatologista, que não tinha treinamento em psicologia clínica em seu nome, me fez a pergunta mais clichê de todos.
“Então,” ele disse, “conte-me sobre sua infância. Você continuou com seus pais?
Ainda assim, cinco anos depois, estou furioso comigo mesmo por não desafiá-lo. Eu deveria ter perguntado por que ele estava jogando psicologia pop em mim, mas ao invés disso eu contei a ele sobre a minha infância.
Ele sugeriu que eu fizesse uma série de sessões com um psicólogo e não perguntei por que, eu apenas balancei a cabeça e chorei. Eu perguntei sobre o tratamento para a dor e como lidar com isso, mas ele disse que conversar com o psicólogo deveria ajudar nisso.
Essa experiência foi a primeira vez que senti uma falta tão grande de compreensão, e cada vez é como quebrar o coração como o último.
Mas não são apenas profissionais da área médica. Quando meu amigo foi diagnosticado com esclerose múltipla um par de anos depois, senti inveja. Você pode acreditar nisso?
Eu nunca disse a ela – ou admiti a ninguém, mas vê-la recebendo cartões e flores de todos os nossos amigos durante as primeiras semanas de seu diagnóstico me fez perceber como poucos dos meus amigos realmente entendiam a fibromialgia.
Ela tinha consultas com vários médicos e enfermeiros, todos lá como parte de sua “rede de apoio”. Eu não tinha ouvido falar de ninguém depois da consulta com o reumatologista – a menos que você conte o psicólogo que me dispensou depois de três sessões, já que ele “não viu nenhum sinal de trauma”.
Eu não tinha essa rede de amigos, familiares ou médicos. Na verdade, naquele momento, eu estava lutando para que meu próprio GP entendesse a dor que eu estava sentindo.
Se você sofre de fibromialgia, então tenho certeza de que seu caminho para o diagnóstico foi tão terrível e complicado quanto o meu. Eu ainda tenho que ouvir falar de um sofredor que foi recebido com compreensão, crença e bondade do começo ao fim.
Acho verdadeiramente desconcertante que tantas pessoas possam estar tão doentes e, no entanto, a falta de apoio e a falta de vontade de compreender é apenas um dado.
Meu conselheiro de saúde ocupacional no trabalho me disse: “A fibromialgia é a condição em voga dos anos noventa – nos anos 90, todos diziam ter ME”, e meu consultor na clínica de dor disse: “Muitos pacientes com fibromialgia vêm chorando e de pijama. – você parece estar bem.
Eu nunca vou entender porque comentários como esses são aceitáveis, especialmente por profissionais do setor de saúde.
Ainda assim, não é de todo ruim. Com o passar dos anos, tive muita sorte. Minha rede de suporte pode não ter existido no início, mas cresceu à medida que me tornei mais sincera sobre minha condição. Eu falo sobre isso no trabalho, faço um blog sobre isso no meu tempo livre e faço conexões através de mídias sociais com outros pacientes com fibromialgia.
Meu namorado é um grande apoio e nunca questionou a validade da minha dor; seu pai vive comigo há mais de 30 anos, então ele entende muito bem as dificuldades que estão associadas à dor crônica e doenças invisíveis.
Mas, infelizmente, li muitas discussões sobre fóruns de fibromialgia em que os pacientes falam sobre sua falta de apoio familiar ou sobre a falta de compreensão em seu círculo social, e é por isso que blogs e redes sociais são tão importantes. Eles nos lembram que não estamos sozinhos.
Existem mais de 5 milhões de pacientes com fibromialgia nos EUA e milhões em todo o mundo e eu gosto de pensar que à medida que nossas vozes se tornarem mais fortes e nos tornarmos mais fortes, aumentaremos a conscientização, estimularemos a pesquisa e a educação e a compreensão da fibromialgia aumentará.
À medida que a pesquisa se desenvolve, os ensaios clínicos serão realizados e quem sabe, talvez um dia, haja uma cura. No entanto, na minha vida, gostaria apenas de ver o nosso diagnóstico significar algo.
Eu quero que as pessoas respondam com compreensão e simpatia quando alguém lhes diz: “Eu tenho fibromialgia”.
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