Tag Archives: Stigma

Dropping the Mask: Does it Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I originally posted this to my other blog. I use that blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

Common Myths About Irritable Bowel Syndrome

In 2013, I was provisionally diagnosed with irritable bowel syndrome (IBS) after no other cause for my chronic abdominal pain and alternating diarrhea and constipation had been found. I don’t have a severe case of it, having mild to moderate abdominal pain a few times a week but rarely severe pain. I am usually not significantly disabled by my symptoms either. I also happen to respond quite well to mebeverine (Colofab), an antispasmodic that relaxes the bowel muscles. Nonetheless, it is frustrating that there are still many common misconceptions about IBS. Here, I will share some of these.

1. IBS is just a fancy way of saying abdominal pain. It is true that the diagnosis of IBS is commonly based on symptom assessments and exclusion of other disorders, since there is no laboratory test to prove someone has IBS. However, IBS has many symptoms other than abdominal pain, and besides, the abdominal pain suffered by IBS patients is chronic and can be severe. It is not like, if you have bowel cramps for a day, you have IBS. Other core symptoms of IBS are diarrhea and/or constipation, feeling bloated, straining or urgency to defecate. Many sufferers have additional fatigue, acid reflux, etc.

2. IBS is all in the head. It is unclear what causes IBS, and stress could be a factor. That doesn’t mean it’s all in the head though. Stress can cause physical symptoms that are no less real just because stress causes them. It is also correct that IBS is associated with problems in the communication between the brain and the gut, but that could be both a brain and a gut problem. For example, people with IBS may be hypersensitive to abdominal discomfort. This however does not mean they choose to be in pain or are overreacting. It is an interplay between biological and psychosocial factors that cause people to experience the symptoms of IBS.

3. There is no clear definition of iBS. Like I said, there is no test for IBS, but there is a definition. For several decades, the Rome criteria have been in use for determining who has IBS. These criteria require that patients have had recurrent abdominal pain or discomfort at least three days per month during the previous three months that is associated with two
or more of the following:


  • Relieved by defecation.

  • Onset associated with a change in stool frequency.

  • Onset associated with a change in stool form or appearance.


When these criteria are met, only limited tests are recommended based on the individual’s situation. In my own case, it was hard to determine whether I met these criteria, as my pain certainly wasn’t relieved by defecation and I wasn’t sure of the other two.

4. IBS is caused by poor diet and lifestyle. Just [insert lifestyle habit or diet here] and you’ll be fine. While some people have food sensitivities that contribute to their abdominal discomfort, others do not. Also, indeed, some people find that exercisng more, not drinking alcohol, not smoking, etc. helps them. Others do not. Besides, even for those who do find that their diet or lifestyle contributes to their IBS symptoms, it may not be easy or may even be extremely hard to adjust their lifestyle or diet. I for one seem to be sensitive to sugary foods, but, as regular readers of my blog will know, I cannot seem to stop eating too much candy.

5. My [family member’s, friend’s, …] IBS was cured by [intervention], so yours can be cured too. Every person with IBS is different, and because many things contribute to IBS symptoms, there are many possible treatments. Mebeverine, the antispasmodic I use on occasion, has few side effects, but also is not very effective with most people. I am lucky that it helps me somewhat, but others wll not find relief from their symptoms with it. Same for diet, lifestyle changes, other medications (eg. antidepressants), psychological interventions, etc. They work for some but not othes.

6. IBS is the same as inflammatory bowel disease (IBD). Inflammatory bowel disease refers to Crohn’s Disease and ulcerative colitis. These are diseases which cause chronic inflammation to the digestive tract. Though some IBS sufferers have minor inflammation, especially if their symptoms set on after infection, it is not nearly as bad as with IBD. I for one had elevated calprotectin, an inflammation marker, when I was first tested for this. This led the doctor to think I might have IBD and get me a colonoscopy. Turns out I didn’t have IBD and on later tests, my calprotectin was normal again. It could’ve been I had an infection contributing to my symptoms.

7. IBS increases the risk of colon cancer. This is another difference between IBS and IBD: while IBD patients have a markedly increased risk of developing colon cancer, IBS patients do not.

8. IBS is not a serious concern. It is true, like I said above, that IBS does not cause cancer or suchlike. However, that doesn’t mean it’s not serious. Many people with irritable bowel syndrome find their symptoms to be severe and disabling. Besides, because IBS is so often misunderstood, many people experience social stigma. This can lead to further suffering. Get educated and stop stigmatizing people who have IBS.

Everyday Gyaan
Mums' Days

Pain Doesn’t Have to Be Visible to Be Real

“I always hated when my scars started to fade, because as long as I could still see them, I knew why I was hurting.” – Jodi Picoult, Handle with Care

I am a self-injurer. Have been since childhood. Part of the reason has always been to feel something other than emptiness, loneliness, or emotional pain. However, part of the reason has also always been to make my pain be visible. Not even necessarily to others, but to myself.

It feels kind of odd to admit this. After all, wanting to express pain is seen as overreacting, attention-seeking. We are taught to hide and numb out our pain.

I once read a Dutch book on psychosis which started out by eplaining that today’s psychiatry is aimed at ignoring people’s inner experiences, or altering them with drugs. According to the author, we live in a kind of brave new world, where everything is aimed at individual and social stability. Take some soma, baby! And I can relate, having resided in a psychiatric institution for almosot seven years. When I feel stressed, the first response from the nurses is usually to ask if I need a tranquilizer. In fact, when I resided on the locked ward, I’d call oxazepam my “shut up pill”, because nurses would tell me to take it whenever something irritated me.

Please note that psychiatric drugs have some place in treatment of severe mental illness. I take various medications for anxiety, irritability and emotional instability. Sometimes though, I’ve wanted to quit my medicaiton because it numbs me out.

Psychiatric drugs aside, many people are taught that to feel pain is to be weak, and to express it is to be even weaker. Most survivors of trauma feel guilt for the pain they experience, because, you know, others have it worse, it wasn’t that bad after all, you name it. I am still working on admitting that what I suffered was real, and the pain I feel is real as well. Just today, I saw another quote. Something along the lines of: “Your struggles are valid even if others are struggling more.”

Another common misconception is that physical pain is somehow more real than emotional pain. There is a huge stigma associated with mental illness, more so than with physical illness (I’m not saying there’s no stigma associated with physical illness). People all too often think that we can “just get over it” when we’re experiencing emotional turmoil, whereas if there’s something physically or at least visibly wrong with us, it’s real. I am not immune to this, and in my case, this idea perpetuates symptoms such as disordered eating and self-injury.

If you want to get over emotional pain, the first step is admitting it is there and that it is real whether it is associated with visible scars or not. You should not have to convert emotional pain into physical wounds to be taken seriously. Expressing pain in a healthy manner should be allowed, encouraged even, and should be enough to deserve support.

Linking up with Inspire Me Monday and Motivation Monday.

Mental Health Awareness: Living with Significant Mental Illness

Today, I’m linking up with Vicky’s mental health linky for Mental Health Awareness Week in the UK. As regular readers will know, I’ve been diagnosed with a mental illness for years. My original diagnosis was adjustment disorder, because I had landed in a psychiatric crisis when living indpendently and just didn’t meet the criteria for depression. My parents joke that I just didn’t wake up at the right time, because my doctor told me when I had sleep disturbances, that they weren’t typical of depression. I’m pretty sure I wasn’t clinically depressed.

Then came impulse control disorder NOS, which was basically an extension of the adjustment disorder I suppose, except that it reflected just my behaviors and not my moods.

In 2010, I was diagnosed wit dissociative identity disorder and PTSD. I want to tell anyone with a diagnosis of PTSD that it’s not a life sentence. I had a mild case as far as the regular symptoms were concerned (I also had symptoms of complex PTSD, and still do). EMDR treatment was suggested a few times, which can be very effective. However, because I had such a mild version of PTSD, the symptoms lessened to the point where I no longer needed the diagnosis with a lot of talking about my traumatic experiences. I later found out that talking and talking on about your trauma under a therapist’s guidance until it doesn’t hurt as much anymore may in fact be effective in people not responding ot EMDR. I don’t know the specifics of this therpay, which is called imaginary exposure, and I didn’t get any formal form of treatment for the PTSD myself.

As for the DID, I have or had a mild version of that too, probably more dissociative disorder NOS, and was able to hide the symptooms when people weren’t accepting of them anymore. There are many people, mostly peers, who believe my diagnosis of DID was incorrect. As for my therapist, she changed it to borderline personality disorder and feels this includes mild versions of DID too, so that I don’t need an additional diagnosis.

What is it like living with a mental illness? Well, for me, it is one confusing experience. I am very suggestible and have a poor sense of self. This means that I absorb many emotions from other people, and yet I do not know how to handle these emotions. I can have rapidly shifting, dramatic mood swings. One momnet, I’m fine; the next, i’m raging. Then again, my definition of “fine” is probably not the same as a currenlty mentally healthy person’s, because I’m always somewhat anxious and/or depressed.

Borderline personality disorder often co-occurs with other disorders. I have no additional diagnoses (other than autism, which I don’t consider a psychiatric disorder), but I could likely have been diagnosed with a range of disorders if this would make a difference. As I said, I have dissociative symptoms. I also have suffered from chronic, low-grade depressive moods since my teens, and likely had what is now called disruptive mood dysregulation disorder as a child. I also have some level of anxiety and used to have quite bad obsessive-compulsive symptoms in my teens and early twenties. They however went away witout treatment when I was hospitalized, so were likely a response to stress. Same with many of my somatic symptoms.

There is treatment for most of my mental health symptoms. In fact, I have improved a great deal over the years. That doesn’t mean my mental illness can be cured. I strive for recovery, which means living a meaningful life in spite of my mental illness.

Living a meaningful life, for clarity’s sake, does not necessarily mean not needing mental health support. It is a common misconception, which I fight even with my therapist, that needing less support is the ultimate measure of quality of life. I, for one, am likely to need support for the rest of my life. This doesn’t mean I can’t find joy or even happiness. I find joy in my hobbies, which include blogging, crafting and reading. I find happiness through my relationship with my husband. I do still have significant mental health problems, and I won’t say they don’t limit me. Then again, I’m more limited by the idea that needing less support is more important than feeling better.

Disability and Childlessness: It’s Complicated

I am disabled. I am childless. For a long while, I identified as childless by choice. In a way, it is a choice, because I do not experience reproductive problems that I know of. In another way, it’s not a choice, because I would’ve wanted to be a parent. I’m not “childfree”. I am disabled, and this has influenced my decision to remain childless. That doesn’t make it not a decision, but it makes the decision tougher than had I truly been childfree.

On Musings of an Aspie, there’s a post on honoring your choices as an autistic woman (or man). It is a postscript to the autistic motherhood series on the Autism Women’s Network. The post concludes that older autistic parents have a responsibility to share what they’ve learned with the younger generation of autistics. This, in my opinion, goes for autistic childless people too. As autistics, we often feel left out, and it’s important to have people whose experiences we can relate to who are older than us and can share with us what they’ve learned. Likewise, we need to be mentoring the even younger generations.

I find it extremely hard to connect to people with whom I have enough in common that we can share our knwoledge and experiences and support each other this way. This may be because I have multiple disabilities. The Internet has opened a world for me, but when, with this current blog, I began to spread my wings outside of the disability blogosphere, it also amplified my differences. It may be just me, but I see Mom bloggers everywhere.

Childlessness, like disability, is a minority status. And now that childlessness is no longer the only way for disabled women, it adds up to someone’s otherness. I’m not saying that childlessness should be the norm again for disabled women. What I do want to say is that it’s still a reality for a lot of disabled women (and men), and that it’s often still a painful reality that is complicated by prejudice and stimma both surrounding disability and childlessness. I do understand that the assumption that disabled people are childless by default, needs to be challenged, but this assumption should not be replaced with additional stigma for the person who finds their disability actually does make it impossible for them to become a parent.

Blog for Mental Health 2014

Just a few minutes ago, I discovered Blog for Mental Health 2014, and I was excited to participate.

Blog for Mental Health 2014

I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.

Now, why am I blogging for mental health? Those of you who’ve visited me before, will know, but for those who don’t, here’s a little about my lived experience. I have suffered from mental health problems for a slong as I can remember. My first encounter with the mental health system was in 2006, when I was being assessed for and eventually diagnosed with autism. I later got additional diagnoses of dissociative identity disorder and post-traumatic stress disorder. These diagnoses were replaced by a diagnosis of borderline personality disorder in 2013. I have resided in a mental institution for over six years, and have met many people with various mental health conditions this way. I have also experienced first-hand the stigma that comes with mental illness. Therefore, I blog to raise awareness for mental health this year.

Personality Disorders Do Not Make You Unloveable

A while ago, I mentioned having read in a women’s magazine about two people who were parents of adults with borderline personality disorder. I just reread these stories, and the first one attributed all his daughter’s unfavorable characteristics – the fact that she only came around when she needed her parents, the fact that she wouldn’t allow the parents to see her child, etc. -, to BPD. This is a pretty common theme. If you c heck out any site for family of borderlines, you’ll see that borderlines are inevitably characterized as unloveable and their unloveability is inevitably due to their BPD.

Let me set this straight for you: no mental illness makes a person intrinsically unloveable, except maybe in certain cases where the criteria of that mental illness are inevitably bad, and then we’re having a circular argument. I’m talking about psychopathy, for example, but even people with this condition may want to heal.

Borderlines and others with personality disorders more commonly than those without them have characteristics that are undesirable. For this reason, a personality disorder may cause someone to appear unloveable, but then it’s still not that personality disorder in itself that causes it, but the way the patient chooses to handle their disorder. I for one fight my BPD tendencies and try hard to recover. This doesn’t mean I’m there already – I am not, and there are still characteristics of mine that are pretty undesirable. Then again, everyone has more or less undesirable traits, and it is only when these traits cause a person to either suffer significantly or become a danger to themselves or others, that we call it a personality disorder.

Let’s also consider the fact that most people with mental illness, including personality disorders, suffer at least as much from their illnesses as those around them do. The cluster of disorders to whcih BPD belongs in DSM-IV, is characterized by the patients being a pain in the ass. Psychopathy and narcissism are in the same cluster, but then again even people with these conditions may want to heal and try to hurt their relatives as little as possible.

It’s true, most mental illnesses include odd or annoying behaviors, or they wouldn’t be recognized as mentally illnesses. I for one get extremely annoyed by most people with psychotic disorders. Then again, does this mean that psychotic disorders make someone annoying? No. It’s the annoying behavior that is inappropriate, and people without mental illness may well exhibit the same behavior, only it isn’t seen as part of a mental illness. I remember a few years back the Institute for the Study of the Neurologically typical proposing criteria for normal personality disorder, neurotypical disorder, etc. as a humorous rebuttal of the idea that those without mental illness are saved from being a pain in the ass. Check them out and have a good laugh and, if you’re normal or neurotypical, realize the truth in some of this.

Meme: 30 Things About My Invisible Illness

I found this interesting meme for invisible illness week, so here goes.

1. The illness I live with is: undiagnosed other than mental illness (borderline personality disorder).
2. I was diagnosed with it in the year: not diagnosed for my physical symptoms. Diagnosed with BPD in 2013.
3. But I had symptoms since: 2007.
4. The biggest adjustment I’ve had to make is: taking meds everyday.
5. Most people assume: my illness is unreal because it’s not diagnosed.
6. The hardest part about mornings are: waking up tired.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my mobile Internet modem.
9. The hardest part about nights are: going to sleep on time, pain.
10. Each day I take __ pills & vitamins. (No comments, please): 6.
11. Regarding alternative treatments I: have not tried them but am open to some.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I don’t work, have never worked. I was given disability benefits with no problem based on my visible disability which is the least of my disabilities.
14. People would be surprised to know: that I’m in pain even when I don’t show it.
15. The hardest thing to accept about my new reality has been: that I can’t live with my husband.
16. Something I never thought I could do with my illness that I did was: take a university-level course.
17. The commercials about my illness: I’ve never seen/heard any.
18. Something I really miss doing since I was diagnosed is: go for long walks alone.
19. It was really hard to have to give up: my dreams.
20. A new hobby I have taken up since my diagnosis is: crafting.
21. If I could have one day of feeling normal again I would: have a great day with my husband.
22. My illness has taught me: all about stigma.
23. Want to know a secret? One thing people say that gets under my skin is: “It’s just stress.”
24. But I love it when people: genuinely ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is: “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” – Helen Keller.
26. When someone is diagnosed I’d like to tell them: well I’ve not been diagnosed with anythign yet except for the BPD which I was just diagnosed with, so I’d like to be on the receiving end of some advice first.
27. Something that has surprised me about living with an illness is: how cruel people can be about judging who is really ill and who isn’t.
28. The nicest thing someone did for me when I wasn’t feeling well was: allowing me to whine for a bit.
29. I’m involved with Invisible Illness Week because: I want to teach people about undiagnosed illnesses and mental illness.
30. The fact that you read this list makes me feel: appreciated.

Ramblings on Self-Image and Diagnosis

This afternoon, I was discussing y treatment plan with my psychologist. I heard her saying something about diagnosis and treatment being complicated by a combination of autism with axis II symptomatology. “Axis II,” I thought, “that’s personality disorders. Have they finally gotten to diagnose me as BPD?” And yes, they have. And instantly the DID and PTSD diagnoses went out the window. Not only that, but BPD, not Asperger’s, is my “main diagnosis” now.

What does this mean? I anticipated it for a long time. In fact, I’ve always doubted the diagnosis of DID. When initially diagnosed, I was too overwhelmed by some of the consulting psychologist’s questions to answer them with the nuance they required. Like, the psychologist asked whether we are aware of what happens when another alter is out. I said no, but the real truth is that we could not have known, since if we lost time, we would only find evidence later and not know that an alter had been out unless we’d had soome awareness of that alter.

I have a very unstable self-image, which goes with both DID and BPD. In addition, I need concrete qualifiers for myself, which I theorize could be an autistic feature. This gets me to identify myself not with abstract characteristics like creative, intelligent or whatever, but with the labels I’ve been given. I’ve gotten better over the past year or so at identifying myself with neutral labels like crafter and blogger.

At the same time, I still do have characteristics that are more abstract. I am not just an autistic, a crafter and a woman. I am not just a dissociator or a borderline. Yet what I am in terms of these labels, fundamentally impacts how people see my characteristics. Like, borderlines are generally assumed to be manipulative attention-seekers. If I’m seen as manipulative when a vulnerable alter is out, for example, that means my needs won’t be listened to. In contrast if I’m seen as vulnerable when I’m manipulating, I won’t unlearn to manipulate. Furthermore, my poor self-image may not alter the core of my mental problems – whether that be a drive to manipulate or emotional vulnerability or both or soomething else entirely -, but it sure alters the way I perceive this core.