The onset of autoimmune disease (AD) in emerging adulthood is a disruptive illness experience that is difficult to make sense of. Compounded by hegemonic ideologies, including the master illness narrative of restitution and stereotype of the hysterical female patient, women with AD struggle with narrative coherency. Guided by the retrospective storytelling heuristic of communicated narrative sense-making theory (CNSM), the present study investigates the meanings, values, and beliefs found in emerging adult women’s narratives of AD onset and diagnosis. Using qualitative in-depth interviews, findings identify how young women experiencing disruptive chronic illness at a formative age make sense and meaning of their experience, highlighting the role of identity (re)construction and resistance to dominant narratives. Framed as lessons learned, themes include rediscovering trust in self, separating self from illness, creating and committing to new normals, challenging assumptions about illness, and recognizing privilege and disparities in care. Theoretical and practical implications are discussed.
AfifiW. A.CornejoM.M. L. Doerfel, & J. L. Gibbs (Eds.). (2020). # CommSoWEIRD: The question of sample representativeness in interpersonal communication research. In Organizing inclusion: Moving diversity from demographics to communication processes (pp. 238–259). Routledge.
2.
Al SawahS.DalyR.FosterS.NaegeliA.BenjaminK.DollH.BondG.MoshkovichO.AlarcónG. (2015). Understanding delay in diagnosis, access to care, and satisfaction with care in lupus: Findings from a cross-sectional online survey in the United States. Presented at the European League Against Rheumatism (EULAR) 2015 Annual Conference, June 2015, Rome, Italy.
3.
AnayaJ. M.HerránM.BeltránS.RojasM. (2022). Is post-covid syndrome an autoimmune disease?Expert Review of Clinical Immunology, 18(7), 653–666. https://doi.org/10.1080/1744666X.2022.2085561
4.
AprilM.Palmer-WackerlyA.BrockR. L. (2021). Perceived severity of chronic illness diagnosis and psychological well-being: Exploring the multiplicity and dimensions of perceived identity change. Identity, 22(3), 247–264. https://doi.org/10.1080/15283488.2021.1919115
5.
ArnettJ. J. (2014). Emerging adulthood: The winding road from the late teens through the twenties (2nd ed.). Oxford University Press.
BakerJ. T. (2022). Clinician-patient communication with LGBT patients. In HoE. Y.BylundC. L.van WeertJ.BasnyatI.BolN.DeanM. (Eds.), The international encyclopedia of health communication. Wiley. https://doi.org/10.1002/9781119678816.iehc0673
8.
BakerJ. T.CusannoB. R.DeanM. (2023). Dilemmas in patient-clinician communication about do-it-yourself hormone therapy: A qualitative study. SSM – Qualitative Research in Health, 3(2023), 100213. https://doi.org/10.1016/j.ssmqr.2022.100213
9.
BasingerE. D.QuinlanM. M.RawlingsM. (2022). Memorable messages about fat bodies before, during, and after pregnancy. Health Communication, 38(13), 3069–3097. https://doi.org/10.1080/10410236.2022.2131982
10.
BettsT.HintzE. A.BuzzanellP. M. (2022). Emplotting anticipatory resilience: An antenarrative extension of the communication theory of resilience. Communication Monographs, 89(2), 211–234. https://doi.org/10.1080/03637751.2021.1971272
11.
BontempoA. C. (2022). The need for a standardized conceptual term to describe invalidation of patient symptoms. Journal of Health Psychology, 27(9), 2104–2114. https://doi.org/10.1177/13591053211024718
12.
BraithwaiteD. O.AllenJ.MooreJ. (2017). Data conferencing. In MatthesJ.DavisC. S.PotterR. F. (Eds.), The international encyclopedia of communication research methods. Wiley. https://doi.org/10.1002/9781118901731.iecrm0057
13.
BraunV.ClarkeV. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
14.
BuzzanellP. M. (2018). Communication theory of resilience: Enacting adaptive- transformative processes when families experience loss and disruption. In BraithwaiteD. O.SuterE. A.FloydK. (Eds.), Engaging theories in family communication (2nd ed., pp. 98–109). Routledge.
15.
CalixtoO. J.AnayaJ. M. (2014). Socioeconomic status. The relationship with health and autoimmune diseases. Autoimmunity Reviews, 13(6), 641–654. http://dx.doi.org/10.1016/j.autrev.2013.12.002
16.
CardwellM. E. (2023). Charting a path: Race, research, and practice in communication studies. Annals of the International Communication Association, 47(3), 358–380. Advance online publication. https://doi.org/10.1080/23808985.2023.2201594
17.
CastleK. M.Koenig KellasJ. (2019). Narrative sense-making in systemic lupus erythematosus. In Kellet’s (Ed.), Narrating patienthood: Engaging diverse voices on health, communication, and the patient experience (pp. 205–225). Lexington Books.
18.
CharmazK. (1991). Good days, bad days: The self in chronic illness and time. Rutgers University Press.
Cooke-JacksonA.SpieldennerA.HudakN.BenC. (2022). Rethinking imbalances of power through health communication: Challenges for scholars, practitioners, and activists. In ThompsonT. L.HarringtonN. G. (Eds.), The Routledge handbook of health communication (3rd ed., pp. 522–538). Routledge. https://doi.org/10.4324/9781003043379-3
22.
CooperR. A. (2021). I am a caregiver”: Sense-making and identity construction through online caregiving narratives. Journal of Family Communication, 21(2), 77–89. https://doi.org/10.1080/15267431.2021.1889554
23.
Dall’EraM. (2013). Chapter 21. Systemic lupus erythematosus. In ImbodenJ. B.HemmannD. B.StoneJ. H. (Eds.), Current Diagnosis and Treatment: Rheumatology, 3e. McGraw Hill.
24.
DincerU.CakarE.KiralpM. Z.DursunH. (2008). Diagnosis delay in patients with ankylosing spondylitis: Possible reasons and proposals for new diagnostic criteria. Clinical Rheumatology, 27(4), 457–462. https://doi.org/10.1007/s10067-007-0727-6
25.
DingsR.GlasG. (2020). Self-management in psychiatry as reducing self-illness ambiguity. Philosophy, Psychiatry, and Psychology, 27(4), 333–347. https://doi.org/10.1353/ppp.2020.0043
26.
Flood-GradyE.Koenig KellasJ. (2018). Sense-making, socialization, and stigma: Exploring narratives told in families about mental illness. Health Communication, 34(6), 607–617. https://doi.org/10.1080/10410236.2018.1431016
27.
FrankA. W. (1995). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
28.
GunningJ. N. (2022). “But you don’t look sick:” Memorable messages of emerging adulthood autoimmune disease. Journal of Social and Personal Relationships, 40(6), 2008–2030. Advance online publication. https://doi.org/10.1177/02654075221137548
29.
GunningJ. N., & Taladay‐Carter (2023). “Grieving the death of possibility”: Memorable messages of (dis)enfranchised loss in invisible, physical illness. Health Communication. Advance online publicationhttps://doi.org/10.1080/10410236.2023.2257942
HildenbrandG. M.PerraultE. K.RnohR. H. (2022). Patient’s perceptions of health care providers’ dismissive communication. Health Promotion Practice, 23(5), 777–784. https://doi.org/10.1177/15248399211027540
32.
HintzE. (2022). “It’s all in your head:” A meta-synthesis of qualitative research about disenfranchising talk experienced by female patients with chronic overlapping pain conditions. Health Communication, 38(11), 2501–2515. Advance online publication. https://doi.org/10.1080/10410236.2022.2081046
33.
HintzE.TuckerR. (2023). Contesting illness: Communicative (dis) enfranchisement in patient–provider conversations about chronic overlapping pain conditions. Human Communication Research, 49(2), 170–181. Advance online publication. https://doi.org/10.1093/hcr/hqad004
HoffmanK. M.TrawalterS.AxtJ. R.OliverM. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113
36.
HolmanA.Kranstuber HorstmanH. (2019). Similarities and dissimilarities in spouses’ narratives of miscarriage: A dyadic analysis of communicated narrative sense-making and well-being. Journal of Family Communication, 19(4), 293–310. https://doi.org/10.1080/15267431.2019.1628763
JaouadS. (2021). Between two kingdoms: A memoir of a life interrupted. Penguin Random House.
39.
JappP.JappL. (2005). Desperately seeking legitimacy: Narratives of a biomedically invisible disease. In HarterL. M.JappP. M.BeckC. S. (Eds.), Narratives, health, and healing: Communication theory, research, and practice (pp. 107–134). Routledge.
40.
KirkS.HintonD. (2019). “I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness. Child: Care, Health and Development, 45(2), 216–226. https://www.doi.org/10.1111/cch.12638
41.
Koenig KellasJ. (2021). Communicated narrative sense-making theory. In BraithwaiteD. O.SchrodtP. (Eds.), Engaging theories in interpersonal communication (3rd ed., pp. 117–129). Routledge.
42.
Koenig KellasJ.Kranstuber HorstmanH. (2015). Communicated narrative sense-making: Understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In TurnerL. H.WestR. (Eds.), The Sage handbook of family communication (pp. 76–90). Sage Publications. https://doi.org/10.4135/9781483375366.n5
43.
Koenig KellasJ. (2018). Communicated narrative sense-making theory: Linking storytelling and wellbeing. In BraithwaiteD. O.SuterE. A.FloydK. (Eds.), Engaging theories in family communication (2nd ed., pp. 63–74). Routledge.
44.
Koenig KellasJ.MorganT.TaladayC.MintonM.ForteJ.HusmannE. (2020). Narrative connection: Applying CNSM theory’s translational storytelling heuristic. Journal of Family Communication, 20(4), 360–376. https://doi.org/10.1080/15267431.2020.1826485
45.
Koenig KellasJ.TreesA. R. (2013). Family stories and storytelling: Windows into the family soul. In VangelisiA. L. (Ed.), Handbook of family communication (2nd ed., pp. 391–406). Erlbaum.
46.
Kranstuber HorstmanH. (2019). Young adult women’s narrative resilience in relation to mother-daughter communicated narrative sense-making and well-being. Journal of Social and Personal Relationships, 36(4), 1146–1167. https://doi.org/10.1177/0265407518756543
47.
Kranstuber HorstmanH.MorrisonS.McBrideM. C.HolmanA. (2021). Memorable messages embedded in men’s stories of miscarriage: Extending communicated narrative sense-making and memorable message theorizing. Health Communication, 38(4), 742–752. https://doi.org/10.1080/10410236.2021.1973718
48.
KrebsE. (2022). A sour taste of sick chronicity: Pandemic time and the violence of “returning to normal”. Communication and Critical, 19(2), 119–126. https://doi.org/10.1080/14791420.2022.2063354
49.
LawlessB.ChenY.-W. (2019). Developing a method of critical thematic analysis for qualitative communication inquiry. Howard Journal of Communications, 30(1), 92–106. https://doi.org/10.1080/10646175.2018.1439423
50.
LernerA.JeremiasP.MatthiasT. (2015). The world incidence and prevalence of autoimmune diseases is increasing. International Journal of Celiac Disease, 3(4), 151–155. https://doi.org/10.12691/ijcd-3-4-8
51.
LuyckxK.Seiffge-KrenkeI.SchwartzS.GoossensL.WeetsI.HendrieckxC.GrovenC. (2008). Identity development, coping, and adjustment in emerging adults with a chronic illness: The sample case of type 1 diabetes. Journal of Adolescent Health, 43(5), 451–458. https://doi.org/10.1016/j.jadohealth.2008.04.005
52.
McAdamsD. P. (1993). The stories we live by: Personal myths and the making of the self. Guilford Press.
53.
MinniearM. J. (2023). The role of counter-narratives in resisting the deficit model of families for BIPOC families. Journal of Social and Personal Relationships, 40(3), 976–995. https://doi.org/10.1177/02654075221123095
Palmer-WackerlyA.VoorheesH. (2020). Illness identity within the family– and beyond. In SolizJ.ColanerC. W. (Eds.), Navigating relationships in the modern family: Communication, identity, and difference. Peter Lang Publishing.
PrymaJ. (2017). “Even my sister says I’m acting like a crazy to get a check”: Race, gender, and moral boundary-work in women’s claims of disabling chronic pain. Social Science and Medicine, 181(1), 66–73. https://doi.org/10.1016/j.socscimed.2017.03.048
58.
RiessmanC. K. (2008). Narrative methods for the human sciences. Sage.
59.
SaldanaJ. (2021). The coding manual for qualitative researchers (4th ed.). Sage.
60.
ScharpK. M.ThomasL. J. (2019). Disrupting the humanities and social science binary: Framing communication studies as a transformative discipline. Review of Communication, 19(2), 147–163. https://doi.org/10.1080/15358593.2019.1595702
61.
ScharpK. M.ThomasL. J.PaxmanC. G. (2015). It was the straw that broke the camel’s back”: Exploring the distancing processes communicatively constructed in parent-child estrangement backstories. Journal of Family Communication, 15(4), 330–348. http://dx.doi.org/10.1080/15267431.2015.1076422
62.
ThompsonC. M.RomoL. K.PulidoM. D.LiaoD.KrissL. A.BabuS. (2023). Denying and accepting a family member’s illness: Uncertainty management as a process. Health Communication, 38(3), 594–607. https://doi.org/10.1080/10410236.2021.1964713
63.
ThompsonC. M.BabuS.MakosS. (2022). Women’s experiences of health-related communicative disenfranchisement. Health Communication, 38(14), 3135–3146. Advance online publication. https://doi.org/10.1080/10410236.2022.2137772
64.
ThompsonC. M.BabuS.MakosS. (2023). A grounded theory of credibility work and illness: Explication and application to the case of women on trial in healthcare. Communication Research. Advance online publication. https://doi.org/10.1177/00936502231184318
65.
ThompsonC. M.DuerringerC. M. (2020). Crying wolf: A thematic and critical analysis of why individuals contest family members’ health complaints. Communication Monographs, 87(3), 291–311. https://doi.org/10.1080/03637751.2019.1709127
66.
ThompsonC. M.PulidoM. D.BabuS.ZenzolaN.ChiuC. (2022). Communication between persons with multiple sclerosis and their health care providers: A scoping review. Patient Education and Counseling, 105(12), 3341–3368. https://doi.org/10.1016/j.pec.2022.07.013
67.
ThompsonM. (2019). Narrative mapping: Listening with health, healing, and illness narratives in the classroom. Communication Teacher, 33(2), 132–138. https://doi.org/10.1080/17404622.2017.1400673
68.
VenetisM. K.Chernichky-KarcherS. M.LillieH. M. (2020). Communicating resilience: Predictors and outcomes of dyadic communication resilience processes among both cancer patients and cancer partners. Journal of Applied Communication Research, 48(1), 49–69. https://doi.org/10.1080/00909882.2019.1706098
69.
VoorheesH. L. (2022). “I was literally just not myself”: How chronic pain changes multiple frames of identity. Health Communication, 38(8), 1641–1653. Advance online publication. https://doi.org/10.1080/10410236.2022.2025702
70.
WicksS.BergerZ.CamicP. M. (2019). It’s how I am. it’s what I am. it’s a part of who I am: A narrative exploration of the impact of adolescent-onset chronic illness on identity formation in young people. Clinical Child Psychology and Psychiatry, 24(1), 40–52. https://doi.org/10.1177/1359104518818868
71.
WilliamsK. M. (2016). My sister’s keeper: Sibling social support and chronic illness. Journal of Medical Humanities, 39(2), 135–143. https://doi.org/10.1007/s10912-016-9394-4
72.
WilsonC.StockJ. (2019). The impact of living with long-term conditions in young adulthood on mental health and identity: What can help?Health Expectations, 22(5), 1111–1121. https://www.doi.org/10.1111/hex.12944
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
