Stigma of Invisible Disability

Stigma & Invisible Disability
Those of us living with invisible disabilities face stigma not only from others but sometimes from ourselves.

Recently read Work Ethic, a post by bpnurse, in which she discusses her life since she stopped working and went on Social Security Disability Insurance (SSDI).

People judge those of us with invisible disabilities. We even judge ourselves.

Someone once asked me if I questioned the ethics of receiving disability. I explained that my disability wasn’t visible. I ran down my history of hypomanic workaholism and subsequent crashing into depression, rapid cycling and mixed states which lead to my hospitalization.

Although I appear fine, traditional work and I do not mix well. My bipolar type II is well-controlled with medication and my careful avoidance of triggers to mood cycling.

Because my brain disorder is invisible and because my husband provides for our family, someone believe that I take advantage of a government program I do not need.

You see, I receive SSDI, which is based on my payment into Social Security taxes from past income combined with my current inability to work. I do not receive SSI, which is based on need (lack of resources).

Still, with this understanding, even I have felt guilty about being on disability (SSDI), about not being “productive.”

One of my psychologists (I’ve been in therapy since I was 18, so I’ve seen many psychotherapists over the decades) suggested I reframe being on disability (SSDI) as a long-term sabbatical. Reframing enabled me to accept my changed life circumstances.

Since then, I’ve further reframed my experience as God making me stay home to care for my high needs son (a migraineur who has struggled with co-occurring anxiety, depression, and health issues).

Of course, I don’t receive disability to be a stay-at-home mom. But, I didn’t want to be a stay-at-home mom. So, I’ve chosen to reframe my experience this way. I had to be broken to leave my ambitions behind, to accept a new lifestyle, to reprioritize my life.

Now, I do other work — I volunteer my writing, my time, and my knowledge and experience — while on my extended sabbatical from my former work.

What I can do, I do, and I do it well. No longer expect myself to work as I once did. It wasn’t good for me or for my family.

Guest Post: Living with Someone with a Personality Disorder

Living with Someone with a Personality Disorder
Photo: justin-follis-450674.jpg from Unsplash 182 Archive

Thank you, Millie Jane, for this guest post. Millie shows compassion for her boyfriend who lives with a personality disorder. Too often those with personality disorders are vilified by family, friends, and even mental health professionals.

Millie is UK-based. I’m curious as to how the UK and the US differ in treating personality disorders.

Under US law, insurers don’t have to offer those with personality disorders parity (equal coverage) for their mental health care. California’s parity law covers these serious mental illnesses (SMI) and severe emotional disturbances (SED) of a child: schizophrenia, schizoaffective disorder, bipolar disorder, major depressive disorders, panic disorder, obsessive-compulsive disorder, pervasive developmental disorder or autism, anorexia nervosa, and bulimia nervosa. People living with personality disorders do not get parity treatment, which is an unjust travesty leading to unnecessary harm.


Living with Someone with a Personality Disorder

Author: Millie Jane

Does having a personality disorder ruin your chances of having a long, happy relationship? The answer is no, you just have to be in a relationship with the right person. I’m writing from the position of that other person. My boyfriend has both Borderline Personality Disorder (BPD) and Antisocial Personality Disorder (ASPD), but that doesn’t mean I’m not the happiest I’ve ever been in a relationship. Sure, it has more challenges than perhaps the “ordinary” (note the quotation marks – there’s no such thing as an ordinary relationship), but I’ve always been the sort of person who can tough out a challenge, which means I get to reap the rewards. His personality disorders are a part of my boyfriend, but not all of him. And the good times definitely outweigh the difficult ones.

Disclosure: I am not a qualified mental health specialist by any means; I simply wish to share my own experiences and advice in the hope that I may be able to help someone in a similar position.

Manifestations of Personality Disorders

A fantastic thing to do when you’re in contact with somebody who has a personality disorder is to do your research. I’m sure if you’re reading this, you’re most likely already doing exactly that. There are many aspects to personality disorders and of course each case is unique, so for the purpose of this post I’ve chosen a select few features of BPD and ASPD that I feel are the big players when it comes to relationships, and some of my experiences with these.

Borderline Personality Disorder (BPD)

Abandonment Issues

When someone is afraid that you’re going to leave them, it makes it difficult to have confidence in a relationship. I think it’s easy for people to get ‘put-off’ by this kind of insecure behaviour (especially early on), and the requirement of almost-constant reassurance can be tiring. This fear of abandonment can also surface in the form of the person suffering with the personality disorder threatening to leave you over what you perceive to be small things. How can you feel secure in a relationship if this keeps arising? The answer is just persistence and understanding. These ’threats’ are just a form of fear expression, to prevent you from leaving first – which is what BPD sufferers see as inevitable at some point down the line.

Self-Harm

This is a touchy subject and the hardest to navigate. It’s incredibly difficult to see someone you love hurt themselves, and a lot of people can’t handle this. If you search online for what to do in this kind of situation, it’s most likely going to tell you to call an ambulance or the police so that the person can be detained in some way to prevent them causing further harm. People suffering from personality disorders find the intervention of strangers exceedingly stressful and, through experience, I’ve found that this isn’t always the best course of action. Don’t get me wrong, if you do not feel equipped to deal with these situations by yourself, you must seek outside help, especially if you feel in danger. There have been times when I’ve resorted to calling an ambulance, as I was unable to calm my boyfriend down and the cuts to his wrists were too severe for me to patch up and required medical attention.

The ability to foresee self-harm is key. If you see an episode arising, being able to hide dangerous objects and helping them take their emotions out another way can prevent self-harm. The most important thing is to remain calm. People with BPD take out emotions on themselves, and they will likely worsen if they have to deal with your emotions as well. Assess the situation. Is the item they are using to do damage going to hurt you if you intervene? If it’s an object such as a knife, do not put yourself in danger by attempting to take this off them. Try to resist from threatening to leave, as the abandonment issues will enhance an episode. Talking in a firm but caring voice, such as that of a parent, can help. Be understanding, don’t tell them what they’re feeling is wrong, highlight positive things and comfort them. I’ve had times when my boyfriend has broken down and ended up laying on the bathroom floor, and I’ve taken a pillow and blanket to him and laid down holding him until he was ready to get up and have me bandage his wounds. Every situation is different, but just knowing to remain calm and supportive is the most important thing. Every day I rub his scars with bio oil, and this kind of acknowledgement and acceptance really helps build trust so that he’s more likely to listen to me during an episode. After an episode, the person usually regrets it and feels ashamed, and so it’s important not to emphasise how it affected you and make them feel worse.

Antisocial Personality Disorder (ASPD)

Anger

You may have heard the saying that all anger stems from fear. I feel as though this is a good phrase to remember in heated situations with someone who has a personality disorder. Often, they may get angry over things you wouldn’t expect them to. Try to ask yourself what the anger could stem from, what are they afraid of? For example, fear of abandonment often surfaces in anger. If you remain calm, speak in a soothing voice, and do not mirror the anger, you can often dissect the issue together and overcome it.

Disregard toward Others

This is probably the biggest issue when it comes to being in a relationship with somebody who has a personality disorder. The important thing to remember is that disregard toward your feelings does not mean they don’t care about you, it’s just an intrinsic part of their disorder. When you’ve been awake all night because of an episode, and then have to work all day and get home to a filthy kitchen, it can be tough. When you try to talk about how you’re feeling, they may emphasise their own issues and value them above yours. This can often seem selfish and be frustrating, but it doesn’t mean they don’t want the best for you, their disorder is just causing them to overlook how you might be feeling. I’ve found the key to this is to step away and take a moment for yourself. Do yoga, have a bubble bath, read a book in a different room. When you feel the moment is right, you have to calmly and maturely talk through what is going on and help the other person see what you’re feeling. Communication is key, and letting the other person know that you understand and don’t blame them can help improve things between you.

Psychiatric Help

Being aware of the manifestations of personality disorders can greatly improve your relationship, but the person suffering still needs to get the right medical help. Unfortunately, too many of us know the struggle of dealing with mental health services. The funding simply isn’t there, and people with mental health problems are largely overlooked as these issues aren’t visible. As if it weren’t difficult enough to seek help in the first place, not receiving the care you need can be incredibly discouraging and cause feelings of hopelessness. If you’re trying to help someone facing this, you need to encourage them to be persistent and not give up. Help is out there, it’s just not always easy to find.

Getting the right diagnosis is the first step, but the aftercare is also key. My boyfriend spent years of being passed back and forth between various mental health services, to no avail. None of the NHS services would prescribe him the medication he’s on now (anti-psychotics) as they felt they were too severe. After many different cycles of the wrong medication, he finally forked out to see a very expensive and distinguished psychiatrist, who after just one hour changed his medication, which has in turn changed his life. Not everyone can afford this, I understand, but there are many specialists out there with fair rates, and it’s worth the spending in exchange for a full life. Many psychiatrists will allow a free session if you’re looking around to find the ‘right fit’, as it’s important the person with the disorder has a doctor they feel comfortable with. Also, if you spend more for a psychiatrist to get that initial correct diagnosis and prescription, you can then change to a less expensive psychologist or counsellor for regular sessions.

Personality disorders are often misunderstood, and people (even some doctors) avoid them because they don’t want to take on the ‘hassle’ of it. The disorder does not define the person and with the right help, compassion and understanding, these people can live a full life with love and success.

Author: Millie Jane

I do not whisper. I ROAR.

I do not whisper. I ROAR.

Motherhood transformed me. My identity changed. Now it changes again. I have constantly reinvented myself over my lifetime.

As a pre-med biochemistry major at UCLA, I was miserable and suicidal. Then I studied part-time at a community college, biding time to find my direction. Finding a niche as a legal studies major at UC Berkeley, I tried to reconcile my inner turmoil with very high professional aspirations.

First I worked as a legal assistant, then went to graduate school, earned a master’s in psychology and became a psychotherapist, only to crash and burn. Recovering from that breakdown, I re-entered the workforce as a temporary file clerk in the commercial real estate industry where I had ten years of success.

Trying to balance work with motherhood, I failed miserably, and ended up hospitalized in a psychiatric unit with rapid cycling and mixed symptoms of bipolar disorder. After months of partial hospitalization, I became a reluctant stay-at-home mother on disability.

What does an overeducated and reluctant stay-at-home mother with a recurring sense of calling (or a manic and delusional symptom of bipolar disorder, depending on one’s perspective) do with her mind? Why attend seminary, of course, which I did on two separate occasions and on two separate occasions had to quit due to symptoms.

Here I am writing my story again. To what end? To reinvent myself once again – not as someone who is ill, but as someone who fights and loves and writes and has hope that new chapters of her life lie ahead.

I have a voice that must be heard. I have a message to share and share it I do. I am not just my son’s mother. I am not my diagnosis. I am able. I am able to affect change. I wield power. I am a mover and a shaker. I do not whisper. I ROAR.

Multicultural Mental Health Facts #MHM

Multicultural Mental Health Facts 1. Mental Health Facts MULTICULTURAL Prevalence of Adult Mental Illness by Race 16.3% 19.3% 18.6% 13.9% 28.3% Hispanic adults living with a mental health condition. White adults living with a mental health condition. Black adults living with a mental health condition. Asian adults living with a mental health condition. AI/AN* adults living with a mental health condition. www.nami.org Follow Us! facebook.com/NAMI twitter.com/NAMIcommunicate Ways to Get Help Talk with your doctor Visit NAMI.org Learn more about mental illness Connect with other individuals and families LGBTQ Community Use of Mental Health Services among Adults (2008-2012) Fact: Mental health affects everyone regardless of culture, race, ethnicity, gender or sexual orientation. 1 in every 5 adults in America experience a mental illness. Nearly 1 in 25 (10 million) adults in America live with a serious mental illness. One-half of all chronic mental illness begins by the age of 14; three-quarters by the age of 24. 11.3% 21.5% 6.6% 10.3% 16.3% 15.1% 4.4% 5.3% 5.5% 9.2% Hispanic White Black Asian AI/AN* Male Female *American Indian/Alaska Native Critical Issues Faced by Multicultural Communities Less access to treatment Less likely to receive treatment Poorer quality of care Higher levels of stigma Culturally insensitive health care system Racism, bias, homophobia or discrimination in treatment settings Language barriers Lower rates of health insurance *American Indian/Alaska Native LGBTQ individuals are 2 or more times more likely as straight individuals to have a mental health condition. 11% of transgender individuals reported being denied care by mental health clinics due to bias or discrimination. Lesbian, gay, bisexual, transgender and questioning (LGBTQ) youth are 2 to 3 times more likely to attempt suicide than straight youth. 2X 2-3X 11% 1 This document cites statistics provided by the National Institute of Mental Health. www.nimh.nih.gov, the Substance Abuse and Mental Health Services Administration, New Evidence Regarding Racial and Ethnic Disparities in Mental Health and Injustice at every Turn: A Report of the National Transgender Discrimination Survey.