Fibromialgia: a condição que ninguém entende

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.

Resultado da imagem

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”.

154 thoughts on “Fibromialgia: a condição que ninguém entende

  1. Hi, There’s no doubt that your site may be having web browser compatibility problems.
    When I take a look at your site in Safari, it looks fine however when opening in I.E., it
    has some overlapping issues. I just wanted to provide you
    with a quick heads up! Aside from that, wonderful blog!

  2. Hello, i believe that i noticed you visited my blog so
    i came to go back the prefer?.I am trying to to find things to improve my
    site!I guess its good enough to use some of your ideas!!

  3. Hey I know this is off topic but I was wondering if you knew of any widgets I could add
    to my blog that automatically tweet my newest twitter updates.

    I’ve been looking for a plug-in like this for quite
    some time and was hoping maybe you would have some experience with something like this.
    Please let me know if you run into anything. I truly enjoy reading your blog and I
    look forward to your new updates.

  4. Hiya! Quick question that’s completely off topic. Do you know how
    to make your site mobile friendly? My website looks weird when browsing from my iphone 4.
    I’m trying to find a theme or plugin that might be able to
    correct this problem. If you have any suggestions,
    please share. Cheers!

  5. I’m not sure why but this website is loading very slow for me.
    Is anyone else having this issue or is it a problem on my end?
    I’ll check back later and see if the problem still exists.

  6. Sweet blog! I found it while surfing around on Yahoo News.
    Do you have any tips on how to get listed in Yahoo News?
    I’ve been trying for a while but I never seem to get there!
    Thanks

  7. Great blog here! Also your website loads up fast!

    What web host are you using? Can I get your affiliate
    link to your host? I wish my web site loaded up as quickly as yours lol

  8. Hey! Someone in my Facebook group shared this website with us so
    I came to take a look. I’m definitely enjoying the information. I’m bookmarking and will be tweeting this to
    my followers! Great blog and fantastic design and style.

  9. Have you ever considered creating an ebook or
    guest authoring on other blogs? I have a blog based upon on the same topics
    you discuss and would really like to have you share some stories/information. I know my visitors
    would value your work. If you’re even remotely interested, feel free to send me an e mail.

  10. Hi, I do think this is a great web site. I stumbledupon it 😉 I am
    going to come back yet again since i have book marked it.

    Money and freedom is the best way to change, may you be rich and continue to guide other people.

  11. whoah this weblog is wonderful i really like reading your articles.
    Keep up the good work! You recognize, many people are looking around for this info, you could help them greatly.

  12. Hey there! Someone in my Myspace group shared this website with us so I came to take a look.
    I’m definitely loving the information. I’m bookmarking and will be tweeting this to my
    followers! Wonderful blog and brilliant design and style.

  13. Does your site have a contact page? I’m having a tough time locating it but, I’d like to send you
    an email. I’ve got some recommendations for your blog you might be interested in hearing.
    Either way, great blog and I look forward to
    seeing it grow over time.

  14. An intriguing discussion is definitely worth comment.
    There’s no doubt that that you should write more about this subject,
    it may not be a taboo matter but typically people do not talk about such topics.
    To the next! Cheers!!

  15. It’s actually a nice and useful piece of info. I am satisfied that you shared this helpful info with us.

    Please stay us informed like this. Thanks for sharing.

  16. What i do not understood is in truth how you are not
    really a lot more well-preferred than you might be now.
    You’re so intelligent. You understand therefore considerably
    in the case of this matter, made me for my part believe it from a lot of varied angles.
    Its like men and women aren’t interested unless it is one thing to accomplish with Lady gaga!

    Your own stuffs great. Always maintain it up!

  17. If you want to increase your knowledge just keep visiting this web page and
    be updated with the most up-to-date information posted here.

  18. Spot on with this write-up, I really believe that this web site needs a lot more attention.
    I’ll probably be back again to read through more, thanks for the info!

  19. You have made some really good points there.
    I checked on the internet to learn more about the issue and found most individuals
    will go along with your views on this site.

  20. Howdy are using WordPress for your blog platform?
    I’m new to the blog world but I’m trying to get started and create my own. Do you require any coding knowledge
    to make your own blog? Any help would be greatly appreciated!

  21. Pingback: Google
  22. Unquestionably consider that that you said.
    Your favorite reason appeared to be on the web the easiest factor to
    take into accout of. I say to you, I definitely get irked at the
    same time as other folks consider worries that they just don’t know
    about. You managed to hit the nail upon the highest as neatly as outlined out the whole thing without
    having side effect , folks can take a signal. Will likely be
    back to get more. Thank you

  23. excellent submit, very informative. I ponder why the opposite specialists of
    this sector do not realize this. You should continue your writing.
    I’m sure, you have a great readers’ base already!

  24. I think this is among the most significant information for me.
    And i’m glad reading your article. But should remark on some
    general things, The site style is perfect, the articles is really great :
    D. Good job, cheers

  25. Wonderful post however I was wanting to know if you could write a litte more on this
    topic? I’d be very grateful if you could
    elaborate a little bit further. Many thanks!

  26. Pingback: big black dong
  27. Write more, thats all I have to say. Literally, it
    seems as though you relied on the video to make your point.
    You definitely know what youre talking about, why throw away your intelligence on just posting
    videos to your site when you could be giving us something informative to read?

  28. Hey there I am so excited I found your site, I
    really found you by accident, while I was browsing on Bing for
    something else, Nonetheless I am here now and would just like to say thanks a lot for a incredible post and
    a all round interesting blog (I also love the theme/design), I
    don’t have time to go through it all at the moment but I have
    saved it and also included your RSS feeds, so when I have
    time I will be back to read a lot more, Please do keep up the great work.

  29. I just couldn’t go away your site prior to suggesting that I extremely loved the usual information a person provide to your guests?

    Is going to be back steadily to check out new posts

  30. Hello! Would you mind if I share your blog with my
    twitter group? There’s a lot of folks that I think would really appreciate your content.
    Please let me know. Thanks

  31. It is appropriate time to make some plans for the long run and
    it’s time to be happy. I’ve read this submit and if I may just I desire to suggest you some interesting issues or advice.
    Perhaps you can write next articles referring to this article.
    I desire to read more issues approximately it!

  32. Hey very nice website!! Man .. Beautiful .. Superb .. I’ll bookmark your
    website and take the feeds also? I am happy to search out a lot of useful information here in the submit, we want develop
    more strategies on this regard, thanks for sharing. . . .
    . .

  33. It’s really a nice and helpful piece of info.

    I’m satisfied that you shared this helpful info with us.

    Please stay us informed like this. Thanks for sharing.

  34. Pingback: Google
  35. Does your blog have a contact page? I’m having trouble locating it but,
    I’d like to send you an e-mail. I’ve got some ideas for your blog you
    might be interested in hearing. Either way, great site and I look forward to seeing it improve over time.

  36. The other day, while I was at work, my sister stole
    my iphone and tested to see if it can survive a twenty five foot drop,
    just so she can be a youtube sensation. My apple ipad is now broken and she has 83
    views. I know this is totally off topic but I had to share it with someone!

  37. Howdy! Someone in my Facebook group shared this
    website with us so I came to give it a look.
    I’m definitely enjoying the information. I’m bookmarking and will be tweeting
    this to my followers! Exceptional blog and great style and design.

  38. I do not know whether it’s just me or if everybody else experiencing problems with your website.
    It looks like some of the text on your content are running off
    the screen. Can someone else please comment and let me know if this is happening to them too?

    This may be a problem with my browser because I’ve had this happen previously.
    Kudos

  39. I think this is one of the most significant info for me. And i am glad
    reading your article. But wanna remark on few general
    things, The web site style is wonderful, the articles is really great :
    D. Good job, cheers

  40. Thank you for another informative blog. Where else could I am
    getting that type of info written in such an ideal manner?
    I’ve a challenge that I am just now working on, and I
    have been at the glance out for such information.

  41. Write more, thats all I have to say. Literally, it seems as though you relied on the
    video to make your point. You obviously know what youre talking about,
    why waste your intelligence on just posting videos
    to your site when you could be giving us something informative to read?

  42. Pingback: Pentair Light
  43. Pingback: sexboer
  44. Pingback: liteblue login
  45. Pingback: porn
  46. I loved as much as you will receive carried out right here.
    The sketch is tasteful, your authored subject matter stylish.
    nonetheless, you command get bought an edginess over that you wish be
    delivering the following. unwell unquestionably come further formerly again since exactly the same nearly
    a lot often inside case you shield this hike.

  47. I am extremely impressed with your writing skills and also with the layout
    on your weblog. Is this a paid theme or did you modify it yourself?
    Either way keep up the nice quality writing, it is rare to see a
    great blog like this one these days.

  48. I’m truly enjoying the design and layout of your site.
    It’s a very easy on the eyes which makes it
    much more pleasant for me to come here and visit
    more often. Did you hire out a designer to create your theme?
    Superb work!

  49. Link exchange is nothing else however it is
    only placing the other person’s website link on your page at proper place and other person will also do same for you.

  50. I have been surfing on-line greater than three hours today, but I never found any interesting article like yours.
    It is lovely price enough for me. In my opinion, if all webmasters and
    bloggers made just right content material as you did, the
    net will probably be a lot more useful than ever before.

  51. This is really attention-grabbing, You are a
    very skilled blogger. I have joined your feed and look
    ahead to in the hunt for extra of your magnificent post. Also, I have shared your web site in my
    social networks

  52. Just wish to say your article is as astounding. The clearness in your post is just spectacular and i can assume you
    are an expert on this subject. Well with your permission let me to grab your RSS
    feed to keep up to date with forthcoming post. Thanks a million and please continue the rewarding work.

  53. Hey there! I’m at work browsing your blog from my new
    apple iphone! Just wanted to say I love reading your blog
    and look forward to all your posts! Keep up the superb work!

  54. I like the helpful information you provide in your
    articles. I’ll bookmark your weblog and test again right here frequently.
    I’m reasonably sure I’ll be informed plenty of new stuff right right here!
    Best of luck for the next!

  55. Pretty nice post. I simply stumbled upon your weblog
    and wanted to say that I’ve truly enjoyed surfing around your weblog
    posts. After all I will be subscribing for your rss feed and I hope you
    write once more soon!

  56. May I simply say what a relief to find a person that truly
    knows what they’re talking about over the internet.
    You definitely realize how to bring an issue to
    light and make it important. More and more people
    should read this and understand this side of the
    story. I was surprised that you are not more popular given that you certainly have the gift.

  57. Hello everyone, it’s my first go to see at this web site,
    and paragraph is in fact fruitful for me, keep up posting these
    types of posts.

  58. Hey there, I think your blog might be having browser compatibility issues.

    When I look at your blog site in Firefox, it looks fine but when opening in Internet Explorer,
    it has some overlapping. I just wanted to give you
    a quick heads up! Other then that, fantastic blog!

Leave a Reply

Your email address will not be published. Required fields are marked *