{"id":36748,"date":"2025-08-12T10:28:35","date_gmt":"2025-08-12T14:28:35","guid":{"rendered":"https:\/\/sparthritis.ca\/?p=36748"},"modified":"2025-08-19T14:41:38","modified_gmt":"2025-08-19T18:41:38","slug":"lhistoire-de-sarah-la-resilience-face-a-une-maladie-chronique","status":"publish","type":"post","link":"https:\/\/sparthritis.ca\/fr\/lhistoire-de-sarah-la-resilience-face-a-une-maladie-chronique\/","title":{"rendered":"L’histoire de Sarah : La r\u00e9silience face \u00e0 une maladie chronique"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb da_disable_devices=\u00a0\u00bboff|off|off\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb da_is_popup=\u00a0\u00bboff\u00a0\u00bb da_exit_intent=\u00a0\u00bboff\u00a0\u00bb da_has_close=\u00a0\u00bbon\u00a0\u00bb da_alt_close=\u00a0\u00bboff\u00a0\u00bb da_dark_close=\u00a0\u00bboff\u00a0\u00bb da_not_modal=\u00a0\u00bbon\u00a0\u00bb da_is_singular=\u00a0\u00bboff\u00a0\u00bb da_with_loader=\u00a0\u00bboff\u00a0\u00bb da_has_shadow=\u00a0\u00bbon\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb2_5″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Sarah a <\/span>commenc\u00e9<\/span> \u00e0 <\/span>ressentir<\/span> des <\/span>douleurs<\/span> au bas du dos <\/span>en<\/span> <\/span>avril<\/span> 2019. Au d\u00e9but, la <\/span>douleur<\/span> <\/span>\u00e9tait<\/span> <\/span>l\u00e9g\u00e8re<\/span>, <\/span>mais<\/span> <\/span>elle<\/span> <\/span>est<\/span> <\/span>rapidement<\/span> <\/span>devenue<\/span> <\/span>d\u00e9bilitante<\/span>. Tr\u00e8s <\/span>vite<\/span>, <\/span>elle<\/span> <\/span>s’est<\/span> <\/span>retrouv\u00e9e<\/span> \u00e0 devoir se lever au milieu de la nuit <\/span>pour<\/span> prendre trois <\/span>ibuprof\u00e8nes<\/span>, <\/span>s’\u00e9tirer<\/span> pendant 20 minutes, <\/span>puis<\/span> <\/span>retourner<\/span> se <\/span>coucher<\/span> <\/span>en<\/span> <\/span>esp\u00e9rant<\/span> <\/span>retrouver<\/span> le <\/span>sommeil<\/span>. <\/span>Souvent<\/span>, <\/span>cela<\/span> ne <\/span>fonctionnait<\/span> pas. <\/span><\/span>\u00a0<\/span><\/p>\n

<\/p>\n

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Regardez l’histoire de Sarah ici.<\/p>\n

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Elle a <\/span>tard\u00e9<\/span> \u00e0 consulter un <\/span>m\u00e9decin<\/span>, pensant que la <\/span>douleur<\/span> <\/span>\u00e9tait<\/span> <\/span>temporaire<\/span>. Elle <\/span>l’attribuait<\/span> \u00e0 son <\/span>traitement<\/span> \u00e0 <\/span>l’acn\u00e9<\/span>, <\/span>connu<\/span> pour <\/span>provoquer<\/span> des <\/span>douleurs<\/span> <\/span>musculo-squelettiques<\/span>, au fait de <\/span>dormir<\/span> sur le <\/span>matelas<\/span> inconnu de son <\/span>copain<\/span> apr\u00e8s <\/span>avoir<\/span> <\/span>quitt\u00e9<\/span> la <\/span>maison<\/span> de <\/span>ses<\/span> parents, et au fait de <\/span>travailler<\/span> \u00e0 domicile sur <\/span>une<\/span> chaise de bureau de <\/span>mauvaise<\/span> <\/span>qualit\u00e9<\/span> pendant la <\/span>pand\u00e9mie<\/span>. Comme beaucoup, <\/span>elle<\/span> a <\/span>consid\u00e9r\u00e9<\/span> <\/span>sa<\/span> <\/span>douleur<\/span> <\/span>comme<\/span> <\/span>normale<\/span> et <\/span>temporaire<\/span>.<\/span><\/span>\u00a0<\/span><\/p>\n

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La transformation<\/span><\/span><\/strong><\/h3>\n
Comme la douleur persistait, la vie de Sarah a radicalement chang\u00e9. Avant l’apparition de ses sympt\u00f4mes, elle \u00e9tait gardienne de but dans une \u00e9quipe de hockey comp\u00e9titive et une v\u00e9ritable \u00ab pile \u00e9lectrique \u00bb qui fr\u00e9quentait l’\u00e9cole \u00e0 temps plein, travaillait plus de 30 heures par semaine et pratiquait des sports de comp\u00e9tition. \u00c0 pr\u00e9sent, elle avait pris 40 livres parce que l’activit\u00e9 physique \u00e9tait devenue trop douloureuse. Elle a commenc\u00e9 \u00e0 souffrir de sueurs nocturnes, ne pouvait plus dormir et devenait de plus en plus d\u00e9prim\u00e9e \u00e0 mesure que son \u00e9tat s’aggravait. <\/span>\u00a0<\/span><\/p>\n
Lorsque Sarah a finalement d\u00e9cid\u00e9 de consulter un m\u00e9decin, ses probl\u00e8mes et ses douleurs ont \u00e9t\u00e9 ignor\u00e9s et attribu\u00e9s \u00e0 sa prise de poids et \u00e0 son cycle menstruel irr\u00e9gulier. Toujours en manque de r\u00e9ponses, elle a d\u00e9cid\u00e9 de demander conseil \u00e0 son m\u00e9decin de famille, qui s’est montr\u00e9 plus r\u00e9ceptif et lui a prescrit un test sanguin HLA-B27 et une consultation chez un physioth\u00e9rapeute. Apr\u00e8s des mois de th\u00e9rapie sans am\u00e9lioration et un test sanguin dont le r\u00e9sultat \u00e9tait \u00ab peu probable \u00bb, son physioth\u00e9rapeute lui a demand\u00e9 de passer une IRM. Les r\u00e9sultats \u00e9taient normaux, laissant son m\u00e9decin sans solution \u00e0 proposer. <\/span>\u00a0<\/span><\/p>\n
Le partenaire de Sarah, qui travaillait dans le secteur de la sant\u00e9, l’a encourag\u00e9e \u00e0 insister pour \u00eatre orient\u00e9e vers un rhumatologue. Par hasard, son m\u00e9decin de famille venait d’assister \u00e0 une conf\u00e9rence donn\u00e9e par un rhumatologue qui s’installait dans la r\u00e9gion de Sarah et qui acceptait de nouveaux patients en dehors du syst\u00e8me habituel de liste d’attente. Sarah a appel\u00e9 imm\u00e9diatement apr\u00e8s avoir quitt\u00e9 le cabinet de son m\u00e9decin et a obtenu un rendez-vous.<\/span>\u00a0<\/span><\/p>\n
[\/et_pb_text][et_pb_image src=\u00a0\u00bbhttps:\/\/sparthritis.ca\/wp-content\/uploads\/2025\/08\/sarahimage3.jpg\u00a0\u00bb title_text=\u00a0\u00bbsarahimage3″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Soutien<\/span> <\/span>professionnel<\/span> <\/span><\/span>\u00a0<\/span><\/strong><\/h3>\n
La rhumatologue a \u00e9t\u00e9 \u00ab une v\u00e9ritable b\u00e9n\u00e9diction \u00bb. D\u00e8s le premier rendez-vous, elle a \u00e9cout\u00e9 Sarah, n’a jamais minimis\u00e9 sa douleur, ne lui a jamais reproch\u00e9 ses probl\u00e8mes et lui a clairement fait comprendre qu’elles allaient travailler en \u00e9quipe. Elle a demand\u00e9 un nouveau test HLA-B27 et une nouvelle IRM, d’une dur\u00e9e d’une heure et demie au lieu de 20 minutes, sp\u00e9cialement con\u00e7ue pour d\u00e9tecter la spondylarthrite.<\/span>\u00a0<\/span><\/p>\n
Les r\u00e9sultats ont montr\u00e9 des l\u00e9sions au niveau de l’articulation sacro-iliaque de Sarah, compatibles avec une spondylarthrite ankylosante. Un \u00e9chantillon sanguin envoy\u00e9 \u00e0 un autre h\u00f4pital a confirm\u00e9 qu’elle \u00e9tait porteuse du g\u00e8ne HLA-B27. Apr\u00e8s trois ans et demi de traitement, Sarah a enfin obtenu un diagnostic clair.<\/strong><\/span>\u00a0<\/strong><\/p>\n
Ce diagnostic expliquait de nombreux aspects de la vie de Sarah qu’elle avait toujours consid\u00e9r\u00e9s comme normaux, notamment une fatigue chronique quelle que soit la dur\u00e9e de son sommeil et une mauvaise posture si visible que les gens lui tiraient physiquement les \u00e9paules vers l’arri\u00e8re pour la faire se tenir droite. <\/span>\u00a0<\/span><\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Traitement et adaptation <\/span><\/span>\u00a0<\/span><\/strong><\/h3>\n
Son rhumatologue lui a prescrit un traitement qui l’a finalement conduite \u00e0 prendre Cimzia, un m\u00e9dicament biologique qui a \u00e9limin\u00e9 presque toutes ses douleurs et consid\u00e9rablement augment\u00e9 son \u00e9nergie. Gr\u00e2ce \u00e0 ce soulagement, Sarah a pu retourner \u00e0 la salle de sport 3 \u00e0 4 fois par semaine et recommencer \u00e0 jouer au hockey. L’activit\u00e9 physique \u00e9tait essentielle pour traiter son \u00e9tat, mais impossible sans m\u00e9dicaments pour contr\u00f4ler les sympt\u00f4mes. <\/span>\u00a0<\/span><\/p>\n
Sarah a d\u00fb repenser de nombreux aspects de sa vie. Auparavant, elle pouvait accomplir toutes ses t\u00e2ches quotidiennes, comme faire les courses, le m\u00e9nage, la lessive et la cuisine, en une seule journ\u00e9e. Aujourd’hui, certains jours, m\u00eame prendre une douche lui demande une \u00e9nergie consid\u00e9rable. Elle a commenc\u00e9 \u00e0 vivre selon la \u00ab th\u00e9orie des cuill\u00e8res \u00bb, se r\u00e9veillant chaque matin avec une quantit\u00e9 d’\u00e9nergie limit\u00e9e qu’elle devait r\u00e9partir avec soin.<\/span>\u00a0<\/span><\/p>\n
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Relations <\/span>professionnelles<\/span> et <\/span>personnelles<\/span>\u00a0<\/span><\/strong><\/h3>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb-38px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Le lieu de travail de Sarah <\/span>s’est<\/span> <\/span>r\u00e9v\u00e9l\u00e9<\/span> <\/span>extr\u00eamement<\/span> <\/span>encourageant<\/span>, <\/span>lui<\/span> <\/span>offrant<\/span> <\/span>une<\/span> <\/span>grande<\/span> <\/span>flexibilit\u00e9<\/span> pour <\/span>ses<\/span> <\/span>nombreux<\/span> <\/span>rendez-vous<\/span> <\/span>m\u00e9dicaux<\/span> et <\/span>lui<\/span> <\/span>permettant<\/span> de commencer \u00e0 <\/span>travailler<\/span> plus tard les <\/span>jours<\/span> <\/span>o\u00f9<\/span> <\/span>ses<\/span> <\/span>douleurs<\/span> <\/span>matinales<\/span> <\/span>\u00e9taient<\/span> trop fortes. <\/span>Ses<\/span> <\/span>coll\u00e8gues<\/span> <\/span>l’ont<\/span> <\/span>pleinement<\/span> <\/span>soutenue<\/span>, <\/span>quel<\/span> que <\/span>soit<\/span> le <\/span>nombre<\/span> de <\/span>rendez-vous<\/span> <\/span>m\u00e9dicaux<\/span> <\/span>dont<\/span> <\/span>elle<\/span> <\/span>avait<\/span> <\/span>besoin<\/span>.\u00a0 <\/span>Sa relation <\/span>amoureuse<\/span> <\/span>\u00e9tait<\/span> plus <\/span>compliqu\u00e9e<\/span>. Elle et son <\/span>copain<\/span> <\/span>\u00e9taient<\/span> ensemble <\/span>depuis<\/span> <\/span>suffisamment<\/span> <\/span>longtemps<\/span> pour <\/span>qu’il<\/span> <\/span>ait<\/span> <\/span>\u00e9t\u00e9<\/span> <\/span>t\u00e9moin<\/span> de <\/span>ses<\/span> <\/span>sympt\u00f4mes<\/span> <\/span>avant<\/span> le diagnostic, de son diagnostic et de son post-diagnostic, <\/span>soit<\/span> trois versions tr\u00e8s <\/span>diff\u00e9rentes<\/span> <\/span>d’elle-m\u00eame<\/span>. <\/span><\/span>Bien qu’il ait \u00e9t\u00e9 solidaire et d’un grand soutien, leur relation a fini par prendre fin, et Sarah pense que le changement radical entre ces diff\u00e9rentes versions d’elle-m\u00eame a peut-\u00eatre jou\u00e9 un r\u00f4le important dans la fin de leur relation.<\/span><\/span>\u00a0<\/span><\/p>\n
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Les difficult\u00e9s \u00e9motionnelles <\/span><\/span>\u00a0<\/span><\/strong><\/h3>\n
Trois ans apr\u00e8s le diagnostic, Sarah s’est retrouv\u00e9e dans une \u00ab p\u00e9riode de deuil \u00bb, nostalgique de sa vie pass\u00e9e o\u00f9 elle n’avait pas besoin de prendre plusieurs m\u00e9dicaments par jour et de recevoir des injections toutes les deux semaines, o\u00f9 elle pouvait accomplir toutes ses t\u00e2ches quotidiennes et o\u00f9 elle ne souffrait pas.<\/span>\u00a0<\/span><\/p>\n
Comme beaucoup, elle avait du mal \u00e0 faire comprendre son exp\u00e9rience aux autres. Quand elle disait qu’elle \u00e9tait fatigu\u00e9e, les gens pensaient qu’elle \u00e9tait paresseuse, sans se rendre compte que son syst\u00e8me immunitaire dirigeait litt\u00e9ralement l’\u00e9nergie de son corps vers l’attaque de son propre organisme. Comme beaucoup, elle avait du mal \u00e0 faire comprendre son exp\u00e9rience aux autres. Lorsqu’elle disait qu’elle \u00e9tait fatigu\u00e9e, les gens pensaient qu’elle \u00e9tait paresseuse, sans se rendre compte que son syst\u00e8me immunitaire dirigeait litt\u00e9ralement l’\u00e9nergie de son corps vers l’attaque de son propre organisme. <\/span>\u00a0<\/span><\/p>\n
Le parcours de Sarah a pris un autre tournant difficile lorsqu’elle a d\u00e9velopp\u00e9 des probl\u00e8mes nerveux dans les mains et les pieds. Apr\u00e8s avoir rempli plus de 60 tubes de sang en trois mois et subi une ponction lombaire, elle a \u00e9t\u00e9 diagnostiqu\u00e9e avec une deuxi\u00e8me maladie auto-immune rare appel\u00e9e CIDP (polyneuropathie inflammatoire d\u00e9my\u00e9linisante chronique), un effet secondaire extr\u00eamement rare du biologique, le m\u00e9dicament qui lui avait apport\u00e9 un soulagement. <\/span>\u00a0<\/span><\/p>\n
Elle a d\u00fb arr\u00eater de prendre ce biologique, une d\u00e9cision d\u00e9chirante. Elle avait dit \u00e0 son neurologue que si elle \u00e9tait oblig\u00e9e de choisir entre avoir des probl\u00e8mes nerveux \u00e0 vie ou arr\u00eater le m\u00e9dicament, elle choisirait peut-\u00eatre les probl\u00e8mes nerveux. Pendant trois mois, elle a compl\u00e8tement arr\u00eat\u00e9 de traiter sa SA tandis que les m\u00e9decins surveillaient l’\u00e9tat de ses nerfs. Elle est rapidement revenue \u00e0 son \u00e9tat ant\u00e9rieur, reprenant 15 des 40 livres qu’elle avait perdues. <\/span>\u00a0<\/span><\/p>\n
Une fois la cause identifi\u00e9e, Sarah a finalement commenc\u00e9 un nouveau traitement biologique, et ses nerfs ont commenc\u00e9 \u00e0 gu\u00e9rir lentement. Cette exp\u00e9rience l’a forc\u00e9e \u00e0 accepter la r\u00e9alit\u00e9 que \u00ab chronique \u00bb signifie vraiment \u00ab pour toujours \u00bb. Elle aurait toujours des rendez-vous chez le m\u00e9decin, serait toujours confront\u00e9e \u00e0 des effets secondaires potentiels et vivrait toujours avec la possibilit\u00e9 de perdre les progr\u00e8s durement acquis. <\/span>\u00a0<\/span><\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Syst\u00e8mes de soutien et espoir pour l’avenir <\/span><\/span>\u00a0<\/span><\/strong><\/h3>\n
Tout au long de ses probl\u00e8mes de sant\u00e9, les amis, les coll\u00e8gues et la famille de Sarah lui ont apport\u00e9 un soutien crucial. Un cousin atteint d’une maladie auto-immune lui a apport\u00e9 sa compr\u00e9hension gr\u00e2ce \u00e0 son exp\u00e9rience commune. Son ex-conjoint l’a aid\u00e9e \u00e0 naviguer dans le syst\u00e8me m\u00e9dical. Son partenaire actuel l’a accept\u00e9e d\u00e8s leur premi\u00e8re rencontre, alors qu’elle ne prenait aucun m\u00e9dicament et qu’elle \u00e9tait au plus mal, passant leur troisi\u00e8me rendez-vous \u00e0 regarder un match de hockey alors qu’elle \u00e9tait allong\u00e9e sur son canap\u00e9, souffrante. <\/span>\u00a0<\/span><\/p>\n
Lorsqu’on lui demande quels conseils elle donnerait \u00e0 une personne nouvellement diagnostiqu\u00e9e, Sarah sugg\u00e8re : \u00ab Soyez indulgent envers vous-m\u00eame en toutes circonstances. Vivre avec une maladie chronique est une montagne russe que la plupart des gens ne comprennent pas. Soyez indulgent envers vous-m\u00eame en acceptant votre diagnostic, en acceptant les changements dans votre vie, en acceptant de ne pas vous sentir bien physiquement ou mentalement. <\/span>\u00a0<\/span><\/p>\n
Sarah trouve de l’espoir dans les progr\u00e8s scientifiques, croyant que de son vivant, elle pourrait voir appara\u00eetre des traitements plus efficaces et moins risqu\u00e9s pour la spondylarthrite. Elle trouve du r\u00e9confort aupr\u00e8s de \u00ab ses proches \u00bb, des personnes qui l’ont encourag\u00e9e \u00e0 vivre en fonction des besoins de son corps, sachant qu’elles resteraient \u00e0 ses c\u00f4t\u00e9s. <\/span>\u00a0<\/span><\/p>\n
L’Association canadienne de spondylarthrite lui a fourni des ressources pr\u00e9cieuses, l’aidant \u00e0 comprendre sa maladie et \u00e0 l’expliquer \u00e0 ses amis et coll\u00e8gues. Ces informations ont fait une diff\u00e9rence significative avant et apr\u00e8s son diagnostic. <\/span>\u00a0<\/span><\/p>\n
Alors que Sarah vit au quotidien avec sa maladie chronique, elle garde \u00e0 l’esprit que m\u00eame si sa vie a chang\u00e9 de mani\u00e8re irr\u00e9versible, elle n’est pas seule dans son parcours.<\/span>\u00a0<\/span><\/p>\n
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D\u00e9couvrez d’autres t\u00e9moignages SpA ici.<\/a><\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"
Sarah a commenc\u00e9 \u00e0 ressentir des douleurs au bas du dos en avril 2019. Au d\u00e9but, la douleur \u00e9tait l\u00e9g\u00e8re, mais elle est rapidement devenue d\u00e9bilitante. Tr\u00e8s vite, elle s’est […]<\/p>\n","protected":false},"author":6,"featured_media":36775,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"
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Sarah began experiencing low back pain in April of 2019. The pain started off mild, but quickly became debilitating. Soon, she found herself having to get out of bed in the middle of the night to take three ibuprofens, stretch for 20 minutes, and return to bed hoping sleep would find her. Often, it didn't.<\/span>\u00a0<\/span><\/p>
\u00a0<\/p>
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Watch Sarah's Story here.<\/p>
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She delayed seeking medical help because she assumed the pain was temporary. She attributed it to her acne medication, known to cause musculoskeletal pain to sleeping on her boyfriend's unfamiliar mattress after moving out of her parents' house, and to working from home on a cheap office chair during the pandemic. As many do, she dismissed her pain as normal and temporary.<\/span>\u00a0<\/span><\/p>
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\"4.27.4\" _module_preset=\"default\" global_colors_info=\"{}\"][et_pb_column type=\"4_4\" _builder_version=\"4.27.4\" _module_preset=\"default\" global_colors_info=\"{}\"][et_pb_text _builder_version=\"4.27.4\" _module_preset=\"default\" global_colors_info=\"{}\"]<\/p>
The Transformation\u00a0<\/strong><\/h3>
As the pain persisted, Sarah's life changed dramatically. Before her symptoms, she had been a competitive hockey goaltender and an \"Energizer Bunny\" who attended school full-time, worked over 30 hours a week, and played competitive sports. Now, she had gained 40 pounds because physical activity became too painful. She began experiencing night sweats, couldn't sleep, and grew increasingly depressed as her condition worsened.<\/span>\u00a0<\/span><\/p>
When Sarah finally decided to see a doctor, her issues and pain were dismissed and attributed to her weight gain and irregular menstrual cycle. Still in search of answers, she decided to seek advice from her family physician, who was more receptive and ordered an HLA-B27 blood test and a physiotherapy referral. After months of therapy with no improvement, and with the blood test coming back as \"peu probable\" (not likely), her physiotherapist requested she get an MRI. The results came back normal, leaving her doctor with no more solutions to offer.<\/span>\u00a0<\/span><\/p>
Sarah's partner, who worked in healthcare, encouraged her to insist on a rheumatologist referral. By chance, her family doctor had just attended a conference by a rheumatologist relocating to Sarah's area who was accepting new patients outside the usual wait-list system. Sarah called immediately after leaving her doctor's appointment and secured a spot.<\/span>\u00a0<\/span><\/p>
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Professional Support\u00a0<\/strong><\/h3>
The rheumatologist proved to be \"an absolute godsend.\" From the first appointment, she listened, never dismissed Sarah's pain, never blamed her for her issues, and made it clear they would work as a team. She re-ordered the HLA-B27 test and requested a new MRI\u2014this one lasting an hour and a half rather than 20 minutes, specifically designed to detect spondylarthritis.<\/span>\u00a0<\/span><\/p>
The results showed damage to Sarah's sacroiliac joint consistent with Ankylosing Spondylitis. A blood sample sent to a different hospital confirmed she carried the HLA-B27 gene. <\/span>After 3.5 years of symptoms, Sarah finally had a diagnosis.<\/span><\/b>\u00a0<\/span><\/p>
The diagnosis explained many aspects of Sarah's life that she had always assumed were normal, chronic exhaustion regardless of how much she slept and poor posture so noticeable that people would physically yank her shoulders back to make her stand up straight.\u00a0<\/span>\u00a0<\/span><\/p>
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Treatment and Adaptation<\/strong><\/h3>
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Her rheumatologist started her on a treatment plan that eventually led to Cimzia, a biologic medication that eliminated nearly all her pain and vastly increased her energy. With this relief, Sarah could go to the gym three to four times weekly and play recreational hockey again. Movement was crucial for treating her condition, but impossible without medication to control the symptoms.<\/span>\u00a0<\/span><\/p>
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Sarah had to rethink many aspects of her life. Previously, she could complete all her routine chores like groceries, cleaning, laundry and cooking, in a single day. Now, some days, even taking a shower drains her energy completely. She began living by the \"spoon theory,\" waking each morning with a finite amount of energy that she had to allocate carefully.<\/span>\u00a0<\/span><\/p>
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Professional and Personal Relationships\u00a0<\/strong><\/h3>
Sarah's workplace proved exceptionally supportive, offering flexibility with her numerous medical appointments and allowing her to start work later on days when her morning pain was severe. Her coworkers supported her fully, regardless of how many doctor's appointments she needed.<\/span>\u00a0<\/span><\/p>
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Her romantic relationship was more complicated. She and her boyfriend had been together long enough that he had seen her pre-symptoms, pre-diagnosis, and post-diagnosis - three vastly different versions of herself. Though supportive and helpful, the relationship eventually ended, and Sarah believes the shift between these dramatically different versions of herself may have been a big contributing factor to the relationship ending.<\/span>\u00a0<\/span><\/p>
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Emotional Struggles\u00a0<\/strong><\/h3>
Three years after diagnosis, Sarah found herself in the \"mourning stage,\" grieving for her past life when she didn't need multiple daily medications and bi-weekly injections, when she could complete a daily to-do list, when she could live pain-free. As many do, she struggled with others not understanding her experience. When she said she was tired, people thought she was lazy, not realizing her immune system was literally directing her body's energy toward attacking itself.<\/span>\u00a0<\/span><\/p>
Sarah's path took another difficult turn when she developed nerve problems in her hands and feet. After filling more than 60 vials of blood in three months and undergoing a spinal puncture, she was diagnosed with a second rare autoimmune disease called CIDP (chronic inflammatory demyelinating polyneuropathy), an extremely rare side effect of Cimzia, the medication that had given her relief.\u00a0<\/p>
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She had to stop taking a specific biologic, a heart-wrenching decision. She had told her neurologist that if forced to choose between having nerve problems for life or stopping the medication, she might choose the nerve problems. For three months, she completely stopped treating her AS while doctors monitored her nerve condition. She quickly regressed to her previous state, regaining 15 of the 40 pounds she had lost.<\/span><\/p>
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With the cause identified, Sarah eventually started a new biologic,\u00a0 and her nerves began slowly healing. The experience forced her to confront the reality that \"chronic\" truly means \"always\". She would always have doctors' appointments, always face potential side effects, always live with the possibility of losing hard-won progress.<\/span>\u00a0<\/span><\/p>
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Support Systems & Hope for the Future<\/strong><\/h3>
Throughout her health challenges, Sarah's friends, coworkers, and family provided crucial support. A cousin with an autoimmune disease offered understanding from shared experience. Her former spouse helped navigate the medical system. Her current partner accepted her from their first meeting, when she was unmedicated and at her worst, spending their third date watching hockey while she lay on her couch in pain.<\/span>\u00a0<\/span><\/p>
Asked what advice she would give someone newly diagnosed, Sarah suggests: <\/span>Give yourself grace in all things. Living with chronic illness is a roller coaster most people never understand. Give yourself grace in accepting your diagnosis, in accepting life changes, in not feeling well physically or mentally.<\/span><\/i>\u00a0<\/span><\/p>
Sarah finds hope in scientific advancement, believing that in her lifetime, she might see more effective and less risky treatments for spondyloarthritis. She draws comfort from \"her people\", supporters who gave her courage to live according to her body's needs, knowing they would remain by her side.<\/span>\u00a0<\/span><\/p>
The Canadian Spondyloarthritis Association provided valuable resources, helping Sarah understand her condition and explain it to friends and coworkers. This information made a significant difference before and after her diagnosis.<\/span>\u00a0<\/span><\/p>
As Sarah navigates each day with her chronic condition, she carries the knowledge that while her life has changed irrevocably, she is not alone on her path.<\/span>\u00a0<\/span><\/p>
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Read more SpA Stories here.<\/a><\/p>
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