In Ten Years’ Time

I had the “kitchen table talk” yesterday. This is the official term for the meeting with your local social consultant to determine your need for services funded through the community support act. The meeting went well, though not much is clear. I’ll be eligible for supports, but I first need to go to the mental health agency near the tiny village to discuss my treatment there. After all, if I go into day treatment or assertive community treatment, part of the services from mental health will overlap with supports I’d be eligible for through the community support act. I’ll push my psychologist to get me an appointment with mental health as soon as possible. The consultant officially has to make a decision on community supports within six to eight weeks.

This has me looking ahead to my life with my husband. I hope to move in with my husband this summer. My mother-in-law had somehow gotten the idea that I’ll be leaving the institution in August, because she asked me how I felt about discharge. I have no clue where she got the idea that I’ll be discharged this August from, but I hope she’s right. After the kitchen table talk, I am somewhat more excited about leaving the institution than I was before. It’s still scary, but it’s a little less scary at least.

I was just looking at the 30-day recovery challenge from BelieveInRecovery.com. ONe of the challenges is to describe where you hope to be in ten years. I already wrote a letter to my future self in 2014. Today, I am going to take it a little easier and just fantasize about my life in ten years’ time.

Ten years ago, I resided in an independent living training home for the disabled. I had made the decision to postpone university till 2007, but had not yet found something to study for 2006. The idea that I am autistic had not been picked up by the staff yet. I was still, in other words, “just blind”. And miserable.

Now, ten years later, I’m not as miserable but still not very happy. I hope that in ten years, I’ll be more comfortable in my own skin than I am now. I obviously hope that I’ll have lost the almost 20kg that I’m overweight.

In the past ten years, if you look at the larger scheme of things, not much has changed. My parents at one point came to talk to my doctor at the locked unit and told him that I’d gone from the rehabilitation center for the blind to the training home and from the training home into a psychiatirc hospital. They overlooked the three months that I’d lived independently, but in the larger scheme of things, how much do these matter?

I hope to change more in the ten years to come than in the past ten years. However, I’m afraid to dream big now. I mean, in an ideal world, I’d go back to school and complete a program in counseling or psychology. Not to be an employed counselor, but just for the knowledge of it. I’d be doing volunteer work helping people navigate the social services field. I’ll have written and published my autobiography. Maybe I’ll do some freelance writing – if I can manage to learn to type properly. I had at least five typeos in that sentence.

One thing that changed within the past ten years and that I hope won’t change within the next ten years, is my relationship status. Ten years ago, I was single and clueless about relationships. Now, I’m still clueless but apparently doing an okay job at loving someone. I hope to still love and be loved by my husband ten years from now.

Transitioning: The End of the Tunnel

On May 1, Mari L. McCarthy started the 22-day life transitions journaling challenge. I didn’t sign up, since I had just failed on committing to the whole health challenge in April. However, today I bought the challenge eBook – from KObo, not Mari’s own site, since it’s much cheaper on Kobo. Since I am about to start in what may be the most important transition of my life, I thought I’d try my hand at the challenge. For day one, we’re supposed to meditate on where we are right now and where we want to be headed.

I visualize the point where I’m now as being at the beginning of a tunnel. It’s not necessarily a dark tunnel, but I can’t see the end of it as I look into it. Nonetheless, i know it will end somewhere in the tiny village, in my husband’s and my home. I can only head this way, but since I can’t see what’s inside the tunnel, I cannot see what’s going to come onto my path as I head into the tunnel. I know where this will end, but I don’t know how or when. After all, no definite date has been set for my discharge from the institution. Though I will have the “kitchen table talk” with the social consultant on Monday, right now I have no idea how I will cross this tunnel and what I’ll find at the end of it.

I can however hear my husban calling me from the other end. I can hear him cheer me up that it’d be so great and utterly exciting to be together at last. I can hear my psychologist and social worker on my current end of the tunnel telling me that I wanted to go into it and come out at home. Even as I sit here, more than a year into the process of arranging for my transition out of the institution, I still am not sure that this is really what I want.

Sometimes, I idealize the end of the tunnel, what it’ll be like to be home. I see my husband lovingly embracing me. As he takes me into his arms, I know that I’m happy being with him and this was the best decision I could’ve made. I go to day activities. My psychologist already shot the snoezelen idea I came up with a few months ago, so I’ll go swimming and doing yoga and going for walks instead. I will meet some nice people at day activities or through the community. I’ll be much more independent than I am now, being able to do some cooking and cleaning on my own. I’ll eventually take up some classes again. My husband loves me when he comes home from work and we’re both happy.

At other times, such as right now, I devalue the end of the tunnel. I look at it as one dark pit in which I’ll fall. My husband and I constantly step on each other’s toes. When he’s home, I’m annoyed by him and he’s annoyed by me. When he’s at work, I’m at home alone sleeping the day away or daydreaming of harming myself. I don’t even have my blog anymore, since my husband doesn’t want me to write about my life at home and I can’t think of anything else to write about. I have nothing left except myself.

However, I will get through. I say this so that even if I don’t believe in it now, I won’t leave a bad omen by being all negative. I will make this transition and it may be hard, but it’s also good. No matter what, my husband loves me.

In Between Mental Illness and Wellness

I have often talked about recovery on this blog. Particularly, I have talked about recovery from my disordered eating habits and to a lesser degree self-injury. I wanted to get rid of my binge eating and stop self-injuring. Today, as I gave this some more thought, I took recovery one step further. So what if I stop bingeing and self-injuring? Would that then mean I’d be cured of my mental illness?

Of course, strictly speaking it wouldn’t. However, what if it did? What if I were cured of my mental illnness? After all, I exhibit far fewer destructive and aggressive behaviors than I did years ago. If I were to check mysel finto a mental hospital just as I am now, with no history of acute mental illness, the registrar would laugh at me. I wonder even if I’d be sick enough for outpatient mental health care if I presented with jut the symptoms I’ve been having lately. My overeating may or may not meet the criteria for binge eating disorder or eating disorder NOS. My self-harm does meet the criteria for non-suicidal self-injury, but then again these crteria are quite vague. My mood does not meet the criteria for a disorder. Heck, even when I was suicidal in 2007 and was clearly in need of acute psychiatric care, the only diagnosis the psychiatrist could come up with was adjustment disorder. Adjustment disorder is no longer covered by health insurance. In other words, under DSM-IV, which doesn’t include binge eating or self-injury as diagnoses, I would hardly if at all qualify for psychiatric care.

Of course, I do have borderline personality disorder and Asperger’s Syndrome – I still meet the criteria for these. However, no general practitioner would come up with the idea that I’d have these if I asked them to refer me to mental health services, and the vague referral letter my GP wrote in 2007 would not be enough now. So if I’m not sick enough at first sight for mental health care, am I then recovered? I don’t think so.

Mental health care has in recent years been more and more reduced to mere crisis intervention or other interventions directed at averting people becoming a pain in the neck. Now I won’t say I can’t be a pain in the neck, but a GP writing my referral letter from scratch now would not know. If you aren’t a danger to yourself or others, you most likely won’t get mental health services paid for through insurance. As such, mental health treatment is focused on curing the symptoms of severe mental illness (which is in most cases impossible), whereas recovery is more than that. Recovery, after all, is getting your life back on track.

As a long-term institution patient, I struggle with this. I am relatively well mentally speaking – probably not as well as I describe in the above paragraphs, but still -, but I don’t have a life. When I was admitted to the mental hospital in 2007, I was a university freshman in a new city. Now I’m nearly 30 and have little that could fulfill my life. I have my blog, but that’s about it. It makes me depressed. Not suicidal-type depressed (or should I say “adjustment-disordered”), but it does definitely make me slightly depressed. If I am not sick enough for mental health services and not well enough to get my life back on track without help, then where do I find help in recovering my life?

I hope that outpatient mental health services aren’t really as bad as I now think they are. I can only hope the recovery model still hasn’t been killed by the push for budget cuts. It however makes me sad to read in memoirs of mental health consumers about the recovery model and using mental health services to get your life back on track. After all, I’m afraid you can’t get mental health care for that now even if you’re severely mentally ill like myself.

Pathological Demand Avoidance (PDA) Awareness Day: My Life with Possible PDA Traits

Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:


  • Passive early history in the first year, avoiding ordinary demands and missing milestones.

  • Continuing to avoid demands, panic attacks if demands are escalated.

  • Surface sociability, but apparent lack of sense of social identity.

  • Lability of mood and impulsivity.

  • Comfortable in role play and pretending

  • Language delay, seemingly the result of passivity.

  • Obsessive behavior.

  • Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

Ten Reasons I Love Spring

Spring is the second best season after summer if you ask me. Summer is better among other reasons because it’s my birthday season. Today, however, I’ll be sharing the reasons why I love spring.

1. The weather. When I was on the locked unit in the city hospital, my unit was close to a park. The beginning of spring was marked by the weather being dry and warm enough that I could lie on the grass in the park. This happened in the middle of March the year I was on that unit. My ideal weather however is dry, sunny with some clouds and a daytime temperature of above 20°C. We don’t usually reach that temperature until the middle of April.

2. Being able to wear skirts and short sleeves. I used to have rules about what weather dictated which clothees, because otherwise I’d be walking in a T-shirt when it’s freezing and wear a hoodie and jacket when it’s 30°C. I have a hard time telling when it’s too hot or too cold, after all. I still use my rules at times, although I forget to check the weather forecast a lot. When it’s above 20°C, I can usually wear skirts and short-sleeved shirts. My pants are all black or denim, but my skirts are in brighter colors. I love wearing them and love wearing my sandals too.

3. Being able to sit in the garden. This is the first spring that my husband and I have a garden. Although I don’t like sun-bathing or otherwise doing nothing while in the garden, I love to spend time in the garden when I have something to do. We don’t have a flowery garden and the fruits and berries won’t be there till summer. Next year summer that is, because my husband says he’ll have to remove half the berries and fruits from the trees once they first appear to prevent the trees from falling over.

4. Daylight. I don’t like the sun shining right through the window of my study at home, but otherwise I love the fact that it’s light outside longer.

5. Going for walks. This is not a specific spring activity, but it’s a lot more fun in the spring. The weather is usually ideal and the air is fresh. I love, love, love going for walks and it’s harder to motivate people to take me on walks during other seasons – or to be motivated myself.

6. Birds. These days, I usually wake up at 6AM. I don’t usually wake up because of the chirping of birds – another patient’s alarm clock wakes me. Still, I do often hear the chirping of birds through my window. I also often still hear them when I go to bed at just before 10PM.

7. Holidays. We’ve got Easter, King’s Day on April 27, the feast of the ascension and liberation day, which of course aren’t always on the same day like this year. After all, liberation day is always on May 5, but the date of the ascension depends on when Easter is that year. Lastly, there’s of course Pentecost, which is coming up this week-end. I am not big on Christian holidays, but I love the extra days off and I do like the good vibes shining off my Bible reading around those days.

8. Birthdays. Not my own like I said, but my mother and sister have their birthdays in the spring. I love visiting my parents usually between my mother’s and sister’s birthday to celebrate both.

9. Seasonal foods. I am not a big fan of typical winter foods like kale with smoked sausage or suerkraut. The beginning of spring means a new menu with more seasonal foods in the institution. Also, of course, at the end of spring there’s a huge variety of seasonal produce at the stores.

10. Renewed energy. I am usually more energized physically during the spring and summer than during the fall and winter. Also, the spring often brings renewed mental energy and motivation. Lastly, I’m often n a better mood during springtime.

What is your favorite season? And what do you love most about spring?

Mama’s Losin’ It

You Baby Me Mummy

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Currently – May 2016

I have seen people, particularly lifestyle bloggers, post a monthly Currently post before. This is a post in which you answer some prompts about what you’re currently up to. Today, I am embarking on the journey too. There are many variations on the theme. I chose to link up with the Currently linky provided by Anne of in residence and Jenna of Gold and Bloom.

Celebrating

It’s liberation day in the Netherlands today. The celebration started after World War II ended for the Netherlands on May 5, 1945. It is also the feast of the ascension of Jesus today. Ironically, though liberation day is much more important than Jesus’ ascension to the Dutch, even to many Christians, it’s a bank holiday because of the ascension. Liberation day only is a bank holiday once every five years. Quite odd if you ask me. I say this even as a progressive Jesus follower, but I want to point out that without liberty many people would not be able to express their faiths.

Official celebrations aside, we celebrated my mother’s and sister’s birthdays last Saturday. My mother’s birthday was on April 28th. My sistehr’s is the 13th of May. Yes, it’s a Friday the 13th this year and no, that’s not a bad omen. My sister was born on Friday the 13th, in fact.

Reading

Lots of blogs. After the April A to Z Challenge is over, I’m surprisingly motivated to read a variety of blogs. I was hardly motivated to check out other participants during the challenge, but now I’m again interested in reading other blogs.

Book-wise, a few new books are coming out this month that I’d love to read. I badly want to read The Genome Generation by Steven M. Lipkin and Jon Luoma, but it isn’t even out in hardcover yet. I saw it up for pre-order months ago on Kobo, but now the idea of an eBook publication seems to have vanished. Consumed, the new book by Abbie Rushton, is out as an eBOok and I badly want to get it. However, I’m not finished reading The Memory of Light by Francisco X. Stork yet and want to read that first.

Pondering

I just discovered Philosophy Experiments, a site full of philosophical games and challenges. I am in pretty good philosophical health according to the Philosophical Health Check. It found only one tension in my beliefs. I also made it through Battleground God with just one direct hit.

Sipping

Coffee, mostly. Oh, and a yucky type of fiber that I got prescribed to help with my chronic constipation. I can’t get used to it.

Going

I went to my parents’ on Saturday, like I said. This was jsut a day trip, as my father is doing construction on the upper floor, where we usually sleep.

This month, I’m not going anywhere, except to my and my husband’s home. I’m there right now because of the bank holiday and also because I had a meeting yesterday. I met with an independent client advocate, who’s going to help me through the process of getting care funding for once I’m living with my husband.

What have you been up to lately?

Realizing I’m Blind

During the #AtoZChalenge, I had all kinds of ideas in my head about what I wanted to blog about once the challenge was over. Now that it’s May and the challenge is over, I however experience a bit of writer’s block. All these ideas that I had during April seem to have vanished. However, O just remembered one of them, which was to write a kind of series discussing topics related to blindness. I am going to answer some of the questions from the Thought Provoker. The Thought Provoker was a monthly question relating to blindness between like 1998 and 2004. The provoking stories and questions are still online. Today, I will write a response to Thought Provoker 10, which asks what a person thinks when they first realize blindness or vision loss has touched their life.

The story seems to be about a person going blind later in life. I was born legally blind. My parents tell me I first realized I was visually impaired at around age seven, when Braille reading was introduced to me. I know my realizing that blindness affected me was a gradual process. At around age eight, I’d ask my parents: “How can yu see that?” According to my parents, it seemed as though I thought I could learn to be sighted.

My parents have always been open about the nature of my blindness. I knew I had a retinal condition. When a great uncle had a retinal detachment and described what it was like, I feared I’d get it myself, because I saw those flashes he described too. It wasn’t that far from the truth indeed.

Strangely, I also feard going blind from totally unrelated, ridiculous causes. Like, I learned about people who drank cleaning products with methanol in them and who subsequently went blind. From that moment on, when my parents used said cleaning product, I was always afraid that I’d accidentally touch it, then lick my fingers and go blind.

In 1993 and 1994 I had two eye surgeries to hopefully save my vision. They were largely unsuccessful, though I still had “hand motion” vision after the second surgery. This means that at 20 feet away, I could see someone’s hand moving but not count their fingers. My parents say that my eye doctor gave up on me after the surgery in 1994. My vision would deteriorate and there was no way of preventing this.

I never accepted this until I entered mainstream secondary education at age thirteen in 1999. I tried for a while to show I still had some vision, but quickly learned it was useless, certainly when compared to sighted people’s. This was the point at which I gave up on myself vision-wise.

Still, my attitude was more one of resignation than of active acceptance. The thought that my sight might be restored someday was on my mind all the time. When, in 2001, a cataract was discovered on my “good” left eye, I pretended to be more concerned with the appearance of my eye than with my vision. Inside, I did worry what had caused this. Was it the distilled alcohol I had drunk in chemistry class the day before?

I finally decided to go pursue cataract surgery in 2013. I wanted to know once and for all whether my sight could be restored and the only way to find out was to get the surgery. It was largely unsuccessful and I gained only very minimal improvement in vision from it. Since then, I realize blindness is not jus tin my life, but I’m in fact totally blind.

The emotion that went through my mind when I realized this was at first stoicism. I never really cared about my sight, I reasoned, and nothing had changed for the worse after surgery anyway. Then came depression and hopelessness. It dawned upon me that this had been my last chance for sight restoration until or unless technology advances. I hate that adage, because it gives me false hope, but I can’t shake it off. In this sense, I’m still in denial.

Z – #AtoZChallenge on Mental Health

Welcome to the last day in the #AtoZChalleng eon mental health, dedicated to the letter Z. I am just in time to publish my post, as I was at my parents’ two hours way all day. I did take my computer, so don’t worry, this post was not my reason to leave. Anyway, today’s words are all on a common theme. Here goes.

Z-Drugs

Z-drugs are a few medications, most of whose generic names start with Z, eg. zaleplon, zopiclone and zolpidem. Besides the letter they start with, they have in common that they work similarly to benzodiazapines but are not benzos. There are three subgroups of Z-drugs, all of which are GABAA agonists, meaning they increase the availability of this neurotransmitter. Z-drugs are used in the treatment of insomnia. Some have advantages over benzdiazepine sleeping pills.

Zombie

Many psychiatric patients, especially those on long-term units, seem a bit zombielike to outsiders. I discussed this when discussing lethargy in my letter L post too. Negative symptoms of schizophrenia and other psychotic disorders may cause people to act like “zombies”, but so do many psychiatric medications, including antipsychotics, anti-anxiety medications and certain antidepressants.

ZZZ

Last year, I discussed sleep in my post on the letter Z for ZZZ. To finish off this year’s challenge, I am going to discuss the same topic. Sleep disorders are common among people with mental illness and of course can be a mental illness themselves.

There are two forms of sleep disorders. Dyssomnias are disorders in the quantity, quality or timing of sleep, such as insomnia or hypersomnia. Parasomnias are characterized by unusual physiological or behavioral events that limit sleep, interfere with certain stages of sleep or with the transition from sleeping to waking. Sleepwalking is an example of a parasomnia.

Like I said, sleep disorders can occur on their own but can also be part of another mental illness. For example, many people with clinical depression experience insomnia, usually waking up way too early in the morning. Some people with depression conversely experience hypersoomnia, sleeping far too much.

Y – #AtoZChallenge on Mental Health

Welcoe to the letter Y post in the #AtoZChallenge on mental health. This was definitely the hardest letter of all. In fact, I cheated a little, because I have only one word and it’s practcally unrelated to mental health. I use it to talk about an important topic in mental health though. Here goes.

Ypsilon

Ypsilon is of course the Greek letter from which the Latin Y is derived. However, it is also the Dutch organization for family members of people with schizophrenia and other psychotic disorders. Like I said, it’s a little out of left field, but I want to use this word to discuss the importance family plays in severe mental illness and recovery from it.

A few years ago, there was some debate that revolved around the question whether organizations of families of patients should receive government funding, or whether it should only be organizations of patients themselves. Ypsilon spoke up, saying that people with severe mental illness cannot necessarily advocate for themselves. Never mind that there’s an organization for people with schizophrenia and related disorders too, called Anoiksis.

Some other organizations, like the Association of Manic-Depressives and Relatives (that’s the literal translation of the Dutch name), allow both patients and family to be active members in the organization. I don’t know how each group is represented on the board of directors. However, this organization makes it clear that patients and family should really work together towards a common goal. Note that bipolar disorder is often as severe a mental illness as schizophrenia, so Ypsilon’s argument that people with severe mental illness can’t advocate for themselves, holds no ground.

Family are, of course, important in people’s mental health recovery. However, it’s still the patients who have the first-hand experience of mental illness. As such, they should always be at the center of their recovery process. Ypsilon is an okay’ish organization in this sense, often cooperating with Anoiksis and having destigmatization as a goal. Other organizations, however, often do not value patients’ input.