Table 4.
Negative Themes and Subthemes I: Adverse Effects
| Themes | Age, Gender, Country | |
|---|---|---|
| Adverse Effects (n = 316) | ||
| 1. Unspecified Side Effects (n = 55) | The side effects were bad enough that I considered stopping the treatment | 23, F, United Kingdom |
| Awful side effects I never had before being put forced to take injections depot | 66, F, United Kingdom | |
| I don’t feel like the benefits of the antipsychotic have been worth the negative side effects for me | 28, F, New Zealand | |
| Virtually every antipsychotic I tried gave me very serious side effects | 31, F, United States | |
| 2 Physical (n = 117) | ||
| (2a) Weight gain (n = 58) | My body is still scarred with stretch marks from the uncontrollable weight gain | 24, M, United States |
| The fight against weight gain is a nightmare | 73, F, United Kingdom | |
| I think they made me gain like 10 kg and that bummed me out as a teens/20s girl | 26, F, United Kingdom | |
| I put on 27 kg and developed diabetes | 67, F, Australia | |
| (2b) Sedation (n = 19) | I refuse to call these medications antipsychotics. They are major tranquilizers | 40, M, Australia |
| Severe sedation made it impossible to continue | 46, F, Australia | |
| (2c) Unspecified (n = 16) | Very damaging to my mental and physical health | 59, F, United States |
| It contributed to the deterioration in my physical health | 50, F, Australia | |
| (2d) Akathisia (n = 15) | I developed severe akathisia within a week of the first dose of Depixol. It lasted over 3 months and ended in a hospital admission | 26, F, United Kingdom |
| The inner restlessness was probably one of the worst side effects I have ever experienced. Developed muscle spasms, jerking limbs, twitching, inner agitation, restless legs, and could no longer function | 34, F, Australia | |
| Created an at times unbearable internal restlessness that drove me to suicidal thoughts | 51, F, New Zealand | |
| (2e) Tardive Dyskinesia (n = 9) | Due to the rather large doses I have long-term TD and seizures | 35, M, Australia |
| The big movements are ugly; the small ones make you look stupid; your mouth is never comfortable again; there are always sores from teeth clamping down; and tongue has no place to rest and feels it does not belong in your mouth. I wish they had killed me instead | 55, F, United Kingdom | |
| 3 Psychological (n = 80) | ||
| (3a) Emotional numbing (n = 42) | I was very emotionally numb when on antipsychotics | 20, F, United States |
| If the point of antipsychotics is to make you an emotional and spiritual zombie, they succeeded | 27 F, United States | |
| They dumb me down & numb me up, I have no happiness or joy | 44, M, Ireland | |
| They made me feel less than human, dead inside | 39, F, United Kingdom | |
| Terrible side effects. Zombified and unable to collect thoughts | 58, F, United Kingdom | |
| It also shut down the good/happy things and the lively energy. … just emptied the whole world from meaning and shut me down completely | 30, F, Israel | |
| (3b) Cognitive dysfunction (n = 28) | They took away the one thing I had previously been able to rely on: my mind, and rendered it useless | 51, F, New Zealand |
| I was frightened about my loss of mental acuity | 63, F, United States | |
| These are difficult drugs to take. Having cotton wool for a brain was not easy | 27, F, United Kingdom | |
| (3c) Caused or exacerbated psychosis (n = 10) | 20 mg of olanzapine gave me the worst hallucinations I have ever experienced | 48, F, New Zealand |
| They caused psychosis, something I hadn’t experienced before | 70, F, Norway | |
| It did not make the voices go away; it increased the amount of voices and how often I heard them | 50, F, Australia | |
| 4. Long Term (n = 31) | It has now been over 4 years and I am still suffering severe side effects | 45, M, New Zealand |
| I have long-term physical issues as a result of their use, including tremors and an autoimmune response associated with taking long-term pharmaceuticals | 50, F, United States | |
| 2+ years after stopping still have sleep issues as withdrawal symptoms | 72, F, Australia | |
| I believe my health has been permanently damaged and my life shortened by unnecessary psychiatric drugging | 54, F, Canada | |
| 5. Relationships (n = 17) | Antipsychotics were life shattering. Imagine not being able to connect with partners anymore | 28 F Canada |
| I lost 10 years of my life. I withdrew from my sons, my siblings, and my friends | 70, F, United States | |
| Loss of concentration meant I couldn’t keep up friendships etc. | 74, F, Australia | |
| I could not relate to my partner and 4 children | 58, F, Australia | |
| 6. Suicidality (n = 16) | Worst experience of my life. I had such severe akathisia (a side effect from antipsychotics) I felt like killing myself | 41, F, United Kingdom |
| My first and only suicide attempt was because of the restlessness of akathisia. No one would believe how much pain I was in | 26, F, United Kingdom | |
| When I am not on psychiatric medication I am not suicidal. I want professionals and medication users to acknowledge suicidality can happen | 27, F, United States | |
| The flattening of my emotional, sexual, and social state was unbearable. This lack of pleasure in my life drove me to suicidal ideation. No attempt was made, but it got to a plan | 55, F, United Kingdom | |
| Antipsychotics made me suicidal, and I tried to kill myself when under a Community Treatment Order. I’ve never been suicidal when not on antipsychotics | 42, F,? |