Viver com fibromialgia é extremamente difícil, já que milhões de pacientes em todo o mundo podem atestar. O fato de que a dor física e emocional não é visível para os outros pode muitas vezes tornar ainda mais difícil. A fibromialgia é conhecida como uma “doença invisível” porque seus efeitos colaterais dolorosos e muitas vezes debilitantes muitas vezes não são aparentes para os outros.
Uma pessoa com fibromialgia pode parecer totalmente bem do lado de fora, mas estar sofrendo de dor insuportável por dentro. Compreender este fato é importante para aqueles que procuram apoiar um amigo ou membro da família de uma pessoa com fibromialgia.
Enquanto muitas vezes é difícil encontrar as palavras para fornecer apoio e esperança para aqueles que sofrem de fibromialgia, aqui está uma lista de 5 coisas que definitivamente não significa que alguém com fibromialgia. Acreditamos que não estamos dizendo nada melhor do que uma dessas 5 coisas.
# 1 “Você não parece doente”
Este comentário demonstra uma completa falta de compreensão das doenças invisíveis. Nem todas as doenças graves apresentam sintomas óbvios aparentes, como estar em uma cadeira de rodas. Sofredores de fibromialgia, muitas vezes, aprenderam mecanismos adaptativos e podem usar sua energia limitada todos os dias para tentar parecer mais normal para os outros. Mas a dor ainda está lá. E mesmo insinuando alguém com fibromialgia, eles estão fingindo que são propensos a colocar em risco seu relacionamento com eles.
# 2 “Deve ser bom não ter que trabalhar”
Não, não é. A grande maioria das pessoas que sofrem de fibromialgia faria qualquer coisa para recuperar sua independência e a capacidade de trabalhar em tempo integral.
A sugestão de que não ser capaz de trabalhar era uma escolha ou que eles são apenas preguiçosos é incrivelmente insultante.
# 3 “Ouvi dizer que a fibromialgia não é uma doença real”
Você já ouviu errado. A causa da fibromialgia ainda está sendo estudada e a quantidade de pesquisas está atrasada em relação a outras condições de saúde devido à falta de compreensão histórica. Mas isso não significa que seja menos real para quase 6 milhões de pessoas com fibromialgia apenas nos Estados Unidos.
A fibromialgia foi reconhecida oficialmente como uma doença real pela indústria de cuidados de saúde nos Estados Unidos no ano passado, quando foi concedido o seu próprio código de diagnóstico e tem sido reconhecida há anos pela FDA e Segurança Administração Social
# 4 “Você só precisa fazer mais exercícios e ser mais ativo”
Se fosse assim tão fácil. O fato é que muitos sofredores de fibromialgia empurram os limites de sua capacidade física, levantando-se e tomando banho todos os dias.
Muitos encontram algum alívio na ioga ou em outros exercícios suaves, como hidroginástica. Mas muitas vezes o tipo de esforço que vem com o exercício não é uma possibilidade.
# 5 “Está tudo na sua cabeça”
Nós salvamos o pior para o final. Na verdade não, não é tudo na minha cabeça. Dor e fadiga são encontradas em todo o corpo e às vezes sinto que até meu cabelo está doendo! Sim, é tão ruim e o fato de você não poder ver minha dor não significa que não seja uma condição física. Estresse, ansiedade e depressão podem piorar todos os sintomas de dor crônica, mas geralmente não causam dor.
Se você chegou até aqui, é provável que você seja um sofredor de fibromialgia ou alguém que realmente queira entender a fibromialgia para apoiar alguém que ama. Abraços suaves para você se você é o primeiro e muito obrigado se você é o último.
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