interwebois

Interweb bois

Not meddically recognized but talking to a therapist that knows about DID/OSDD and doing that type of work

314 posts

Polyfragmented Survey Results!

I'm so sorry it took me so long to get this out...

This post cannot contain all of the responses, so check the reblogs for the rest of the responses that weren't originally included in this post alone.

Ages ago, I put out a polyfragmented system experiences survey (you won't be able to see the questions with that link, it just links to the survey, but since it's been down, it just says thanks for taking the survey lol). It has taken me an extremely long time to finally get this out there.

TOTAL RESPONSES: 148 (1 person was not a polyfragmented system)

(By the way: the reason I had the first question ask whether the person taking the survey is a polyfragmented system is specifically because I wanted to make sure no non-polyfragmented systems were taking the survey because a non-polyfrag system took the previous survey before I updated it. To clear the confusion why I had that question).

Some disclaimers because I feel they are important to remember:

I'm obviously not a professional.

This survey is not professional.

This survey is biased towards Tumblr users.

While this survey can definitely shed light onto common polyfragmented system experiences, it's just not a professional survey and does have its own flaws.

Q1: Are you polyfragmented? - (148 responses)

73.6%, 109 people said “Yes”

24.7%, 36 people said “I'm not sure/I'm questioning if I'm polyfragmented”

1.4%, 2 people gave other responses

0.7%, 1 person said “No”

Q2: What does the term 'polyfragmented' mean to you personally? How do you define it/understand it?- (148 responses)

Most responses mentioned things such as: many alters, complex structure, many fragments, complex splitting patterns, frequent splitting, and more. Most people said the same/similar things, so it isn't worth sharing them, so I'll share responses I personally liked/interesting responses:

Well when we were first introduced to the term it was presented as "A system who had a large alter count, more around the hundreds" but now have come to learn that unfortunately the DID community had no authority or official language or terms and most of the community sees just about everything as "its whatever it means to you". Something that is just increasing in causing issues and fighting and not really helping at all and has caused quite a big toxic positivity movement. There is no official definition of polyfragmentation and this makes it almost meaningless. If you define it as a large number count others will lambast you for "getting it wrong", then others say its "complex" systems. What dose THAT mean? Who defines what complex means? Then it was (for about a week) claimed to be a RACOMA term, but that was quickly dropped as people got angry, again, over the community trying to define a simple word. People claiming "gatekeeping" and "stealing terms" I think its valid to want to define something yourself however if ALL of our words are just "defined by whoever is using it" dose that not make them meaningless? All this to say, I define Polyfragmented as a system who has 50+ alters as well as a large and complex inner structure (not necessarily an innerworld) that often occurs MOSTLY due to extreme traumas.

polyfragmentation to me is more than having a lot of distinct personalities or a lot of alters. its more about the opposite, really: not knowing yourself. you become so disconnected from "you" that you only focus about finding the best path that leads you to escaping the pain and the hurt. and when you're out, you dont know what to do because "you" became obsolete. its a process of figuring yourself out after that, and understanding how you are working with yourself to be "you."

Q3: Are you DIAGNOSED/MEDICALLY RECOGNIZED? - (148 responses)

34.5%, 51 people said “I am not diagnosed or medically recognized with DID or OSDD”

31.8%, 47 people said “I am diagnosed/medically recognized with DID”

12.2%, 18 people said “Started out self-diagnosed and then got officially diagnosed with

DID/OSDD”

5.4%, 8 people said “I am diagnosed/medically recognized with a different dissociative

disorder, but NOT DID or OSDD (however I still suspect/believe I have DID/OSDD)”

2%, 3 people said “I am diagnosed/medically recognized with OSDD”

21 people gave other responses

Q4: Are you SELF-DIAGNOSED with DID or OSDD? (Or suspect that you have DID or OSDD) - (146 responses)

49.3%, 73 people said “Self-diagnosed/suspect DID”

30.4%, 45 people said “I am not self-diagnosed”

8.1%, 12 people said “Self-diagnosed/suspect DID/OSDD (not sure which one)”

4.1%, 6 people said “Self-diagnosed/suspect OSDD”

12 people gave other responses

Q5: How old are you? - (148 responses)

4.7%, 7 people were 13-15

17.6%, 26 people were 16-17

40.5%, 60 people were 18-23

28.4%, 42 people were 24-29

2%, 3 people were 30-40

0.7%, 1 person was 41+

6.1%, 9 people preferred not to say/skip

Q6: Are you a person of color? - (148 responses, multiple answers)

71.6%, 106 people said “No”

18.2%, 27 people said “Yes”

6.1%, 9 people said “Unsure”

15 people (also) gave other responses

Q7: Do you happen to be intersex? - (147 responses)

64.6%, 95 people said “No”

13.6%, 20 people said “I suspect it, but I'm not sure (can't get diagnosed/etc.)”

11.6%, 17 people said “Yes”

8.8%, 13 people said “Unsure”

1 person gave another response

Q8: Select any that apply to you CURRENTLY (DIAGNOSED/MEDICALLY RECOGNIZED ONLY) (this is not a comprehensive list) - (129 responses)

Depression – 72.1%, 93 people

Bipolar Disorder (I/II) – 15.5%, 20 people

Anxiety (General, Social, etc.) – 81.4%, 105 people

OCD – 25.6%, 33 people

Specific Phobia(s) – 17.8%, 23 people

Anorexia Nervosa – 11.6%, 15 people

Bulimia Nervosa – 1.6%, 2 people

Binge-Eating Disorder – 3.1%, 4 people

(ARFID) Avoidant-Restrictive Food Intake Disorder – 10.1%, 13 people

Pica – 3.9%, 5 people

Unspecified/Unknown/Other Eating Disorder – 11.6%, 15 people

PTSD/CPTSD – 76.7%, 99 people

Psychosis – 18.6%, 24 people

Schizophrenia – 7%, 9 people

Autism Spectrum Disorder – 50.4%, 65 people

ADHD – 58.9%, 76 people

Tourette's Syndrome (or other tic disorder) – 11.6%, 15 people

Dyslexia – 7%, 9 people

Dyscalculia – 0.8%, 1 person

Borderline Personality Disorder – 24.8%, 32 people

Avoidant Personality Disorder – 7.8%, 10 people

Dependent Personality Disorder – 2.3%, 3 people

Obsessive-Compulsive Personality Disorder – 2.3%, 3 people

Histrionic Personality Disorder – 1.6%, 2 people

Paranoid Personality Disorder – 1.6%, 2 people

Schizoid Personality Disorder – 1.6%, 2 people

Narcissistic Personality Disorder – 5.4%, 7 people

Antisocial Personality Disorder – 4.7%, 6 People

Unspecified/Unknown/Other Personality Disorder (/mixed PD traits) – 8.5%, 11 people

Q9: Select any that apply to you CURRENTLY (SELF-DIAGNOSED ONLY) (this is not a comprehensive list) - (126 responses, multiple answers)

Depression – 14.1%, 18 people

Bipolar Disorder (I/II) – 3.1%, 4 people

Anxiety (General, Social, etc.) – 14.8%, 19 people

OCD – 25.8%, 33 people

Specific Phobia(s) –15.6%, 20 people

Anorexia Nervosa – 8.6%, 11 people

Bulimia Nervosa – 3.1%, 4 people

Binge-Eating Disorder – 3.1%, 4 people

(ARFID) Avoidant-Restrictive Food Intake Disorder – 14.1%, 18 people

Pica – 6.3%, 8 people

Unspecified/Unknown/Other Eating Disorder – 22.7%, 29 people

PTSD/CPTSD – 34.4%, 44 people

Psychosis – 22.7%, 29 people

Schizophrenia – 7.8%, 10 people

Autism Spectrum Disorder – 50.8%, 65 people

ADHD – 28.1%, 36 people

Tourette's Syndrome (or other tic disorder) – 10.9%, 14 people

Dyslexia – 13.3%, 17 people

Dyscalculia – 2.3%, 3 people

Borderline Personality Disorder – 19.5%, 25 people

Avoidant Personality Disorder – 8.6%, 11 people

Dependent Personality Disorder – 3.9%, 5 people

Obsessive-Compulsive Personality Disorder – 3.1%, 4 people

Histrionic Personality Disorder – 6.3%, 8 people

Paranoid Personality Disorder – 8.6%, 11 people

Schizoid Personality Disorder – 3.1%, 4 people

Narcissistic Personality Disorder – 17.2%, 22 people

Antisocial Personality Disorder – 10.2%, 13 people

Unspecified/Unknown/Other Personality Disorder (/mixed PD traits) – 16.4%, 21 people

Q10: Please select any that apply to you, either currently or at any point in your life. (This is not a comprehensive list)

75.9%, 104 people reported Chronic pain

72.3%, 99 people reported Chronic fatigue

19%, 26 people reported Fibromyalgia

42.3%, 58 people reported (IBS) Irritable Bowel Syndrome (and/or other digestive issues)

0.7%, 1 person reported (IBD) Inflammatory Bowel Disease (Crohn's or Ulcerative Colitis)

30.7%, 42 people reported GERD (and/or other acid reflux/heartburn/etc. issues)

51.1%, 70 people reported Allergy/intolerance (lactose intolerance, peanut allergy, latex allergy, etc.)

4.4%, 6 people reported Epilepsy

2.2%, 3 people reported Diabetes

10.2%, 14 people reported Arthritis

4.4%, 6 people reported Celiac Disease

1.5%, 2 people reported Lupus

4.4%, 6 people reported Rheumatoid Arthritis

2.9%, 4 people reported Psoriasis

0%, No one reported Scleroderma

13.1%, 18 people reported Scoliosis

8%, 11 people reported Endometriosis

19%, 26 people reported (PMDD) Premenstrual Dysphoric Disorder

1.5%, 2 people reported Cancer (any kind)

2.9%, 4 people reported HIV/AIDS and/or other STD(s)/STI(s)

33.6%, 46 people reported Asthma

5.1%, 7 people reported Costochondritis

1.5%, 2 people reported COPD

8.8%, 12 people reported Sleep apnea

5.1%, 7 people reported Narcolepsy

2.2%, 3 people reported POTS

1.5%, 2 people reported PCOS

Q11: Do you feel like OSDD systems and DID systems should combine into one disorder, where there is a "dissociative identity disorder" kind of spectrum, rather than the two separate diagnoses? (OSDD would still exist as a label meaning "dissociative disorder that doesn't meet criteria of any other dissociative disorders", but this is asking about OSDD systems specifically - OSDD-1).

37%, 54 people said “Yes; I feel like OSDD-1 and DID shouldn't exist as separate diagnoses, there should be one diagnosis of DID for anyone that constitutes as being a "system" (meaning a person with DID/OSDD in this context)”

21.2%, 31 people said “No; OSDD-1 and DID systems should remain separate diagnoses”

18.5%, 27 people said “I think the term 'systems' includes people with other "parts-based" disorders/experiences, such as those with cPTSD, BPD, etc.”

50%, 73 people said “I think the lines between "DID", "OSDD", "cPTSD", "PTSD" and more are much blurrier than people think”

30.1%, 44 people said “I think combining the two might make it even more difficult to really "define" what a system "truly" is, since it's already difficult to really be able to see a true, hard line between DID/OSDD and PTSD, cPTSD, etc.”

18.2%, 27 people (also) gave other responses)

Q12: As a polyfragmented system, do you feel that your experiences are different from those who are not polyfragmented? - (146 responses)

38.4%, 56 people said “Yes, I believe my polyfragmented experiences are different from those who are not polyfragmented”

56.2%, 82 people said “I believe that some things are similar, other things are different”

0%, No one said “No, I don't believe my experiences are really much different from those who are not polyfragmented”

5.5%, 8 people gave other responses

(This is all that I can currently fit in this post! No like I literally have reached the photo limit lmfao. I will be reblogging with the rest of the responses!)