Wenn du ständig Schmerzen hast und dir niemand glaubt

Jennifer Brea war 28 Jahre alt, als sie nicht in der Lage war, einen Spaziergang oder ein Fahrrad zu beenden, sie ging zur Hälfte nach Hause und schlief stundenlang.

“In gewisser Weise dachte ich:” Oh, vielleicht werde ich einfach alt “, sagt der Regisseur und Protagonist des neuen Dokumentarfilms” El Malavos “. “Ich war erst 28 Jahre alt und dachte nach: ‘Vielleicht werde ich einfach alt? “Und ein Teil ist, weil ich ständig zum Arzt ging und er zu mir sagte: ‘Es geht dir gut, es geht dir gut, dir geht’s gut'”.

Es ging ihr nicht gut, ihre Müdigkeit verschlechterte sich und bald darauf promovierte sie in Harvard, Ph.D. Der Student konnte weder Sätze vervollständigen noch eine E-Mail senden. Die Ärzte konnten jedoch immer noch nichts identifizieren, was wahrscheinlich falsch mit ihr war, und es wurde ihr schließlich gesagt, dass sie eine “Umwandlungsstörung” hatte: eine moderne Version der Hysterie.

Tatsächlich hat Brea, der jetzt 35 Jahre alt ist und in Kalifornien lebt, ein chronisches Müdigkeitssyndrom (CFS), auch bekannt als myalgische Enzephalomyelitis. Der Zustand verursacht schwere Erschöpfung, Gehirnnebel und oft Schmerzen. Er vermutet, dass sein Fall im Jahr 2011 durch ein Fieber von einem Tag ausgelöst wurde, obwohl über die Ursachen chronischer Müdigkeit wenig bekannt ist.

Sein Dokumentarfilm, der jetzt im IFC Center gezeigt wird, zeichnet seinen Kampf mit CFS und das Stigma der wenig bekannten Krankheit auf: Da der Zustand immer noch unter dem Radar steht, glauben viele, dass diejenigen mit CFS einfach müde sind Oder übertreiben. die Symptome

Der Brea-Kreuzzug gewinnt an Popularität, zum Teil dank einer Handvoll Prominenter, die ihre eigenen Kämpfe gegen chronische und schwer zu diagnostizierende Krankheiten begonnen haben.

Sängerin Lady Gaga machte Anfang des Monats Nachrichten, als sie ankündigte, dass sie an Fibromyalgie litt, einer anderen chronischen Schmerzerkrankung. Sie stornierte eine Etappe einer Tour, um sich zu erholen, aber selbst sie sah sich der Reaktion von Fans gegenüber, die nicht an ihre Krankheit glaubten.

Bei beiden Bedingungen gibt es keinen Bluttest, um eine Diagnose zu bestätigen. Die Diagnosen werden vielmehr anhand der selbstberichteten Symptome eines Patienten erstellt, wie etwa Schmerzen oberhalb und unterhalb der Hüften bei Fibromyalgie.

Zwar gibt es Forschungen zu den Biomarkern der einzelnen Zustände (z. B. hohe Konzentrationen bestimmter Proteine ​​im Blut), es ist jedoch schwierig, mit Sicherheit zu wissen, ob eine Person an einer Erkrankung leidet.

Ein weiteres Problem: Es wird geschätzt, dass Frauen sechsmal häufiger an CFS leiden als Männer und doppelt so häufig an Fibromyalgie leiden.

Historisch werden Frauen, die über Symptome wie extreme Schmerzen und Müdigkeit berichten, als “hysterisch” bezeichnet und häufig so behandelt, als ob ihre Zustände rein psychologisch wären.

Historisch werden Frauen, die über Symptome wie extreme Schmerzen und Müdigkeit berichten, als “hysterisch” bezeichnet und häufig so behandelt, als ob ihre Zustände rein psychologisch wären.

Als Brea zum ersten Mal krank wurde, teilte ihm ein Neurologe mit, dass seine Symptome wahrscheinlich auf ein in seiner Vergangenheit vergessenes emotionales Trauma zurückzuführen seien.

Der Rheumotologe von NYU Langone, Paula Rackoff, sagt, dass sich diese Art von Reaktion aus der medizinischen Gemeinschaft ändert, was zum Teil auf die Zunahme von Ärztinnen zurückzuführen ist.

“Ich denke, Frauen reagieren anders auf Frauen [als Männer]”, sagt Rackoff.

Aber Skeptiker sind immer noch beunruhigend.

Letzte Woche veröffentlichte Gaga ihre Probleme auf Instagram und verteidigte sich vor Kritikern.

“Ich verwende das Wort” leiden “nicht aus Mitleid oder Aufmerksamkeit, und ich war enttäuscht, dass die Leute online sagen, dass ich dramatisch bin. Ich erfinde oder interpretiere das Opfer, um die Tour zu verlassen”, schrieb er in einem Interview. Legende des Fotos. “Ich verwende das Wort Leiden nicht nur, weil Trauma und chronische Schmerzen mein Leben verändert haben, sondern weil sie mich daran hindern, ein normales Leben zu führen.”

In seiner neuen Netflix-Dokumentation “Gaga: Five Foot Two”, die jetzt ausgestrahlt wird, folgen ihm die Kameras, während er weint, schüttelt und zu einem Arzt geht, um einen Triggerpunkt zu injizieren, bei dem ein Arzt Medikamente in die Muskeln injiziert den Schmerz betäuben. von seiner Hüfte bis zu seinem Kiefer ausstrahlen.

“Sehe ich erbärmlich aus?”, Fragt er in einer Szene, während er weint. “Ich bin so peinlich.”

Gaga kümmert sich nicht nur um ihre eigene Fähigkeit, mit Schmerzen umzugehen, sondern auch um andere Menschen mit der Krankheit, die nicht das gleiche Unterstützungssystem oder die gleichen Mittel zur Behandlung haben wie sie.

Aber auch Gaga kämpft darum, Ärzte zu finden, die wissen, wie sie ihren immer noch rätselhaften Zustand behandeln. In einer anderen Szene, sagt er, zieht er es vor, schmerzhafte Behandlungen zu versuchen, als stundenlang auf einem MRI-Gerät zu sitzen, nur um am Ende Advil zu nehmen.

Brea macht die Schwere seines Zustands für die Zeit verantwortlich, die er brauchte, um einen Arzt zu finden, der ihr glaubte.

“Ich glaube, es besteht eine gute Chance, dass ich, wenn sie mich diagnostiziert hätten, vorher nicht so krank geworden wäre wie ich, und ich wäre vielleicht nicht im Rollstuhl gelandet”, sagt er und fügte hinzu, dass er sich zunächst nicht ausruhen wollte trainieren und arbeiten. Antivirale Medikamente und die jüngsten Änderungen des Lebensstils haben ihre Müdigkeit verbessert, aber sie glaubt nicht, dass sie jemals vollständig “heilen” wird.

Sie ist besorgt, dass Fehlinformationen und Fehldiagnosen es Patienten möglicherweise erschweren könnten, auch Unterstützung von ihren Angehörigen zu erhalten.

“Ich denke, dass viele Leute denken, es ist in ihren Köpfen, und ihre Familien wissen manchmal nicht, was sie tun sollen”, sagt Brea. “Weil sie die Person unterstützen wollen, die sie lieben, aber wenn der Experte etwas anderes sagt, ist es sehr schwer zu wissen, an wen er glauben soll. Und dieser Mangel an medizinischer Ausbildung [von Seiten der Ärzte] trägt dazu bei, dass sich Familien, geschiedene Personen und getrennt lebende Familienmitglieder voneinander trennen. “

Brea sagt, während ihr Mann vom ersten Tag an an ihrer Seite war, bereut sie immer noch “die Art und Weise, in der [ihre Krankheit] ihre Träume beeinflusst hat”.

Rackoff sagt, dass diejenigen, die vermuten, dass sie eine der beiden Krankheiten haben, vollkommen berechtigt sind, eine zweite oder dritte Meinung einzuholen. “Verwerfen Sie nicht Ihren Instinkt.”

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