Peer to Peer, the writings of a Consumer Advocate for both LGBT mental health and HIV/AIDS issues since 2004.
Please visit my homepage at www.bipolarbear.us valuable resources on HIV and Mental Illness
Fixing relationships with those you may have hurt during a mood episode is never easy, but believe me: it is possible. And you can!
By Julie Fast
Many of us with bipolar disorder make terrible decisions when we are ill, and rebuilding our lives afterward is naturally overwhelming—especially after a massive episode, when extreme mania and psychosis might have put you in the hospital, or jail (or both). Talking with creditors, school, work, and those you may have hurt is never easy, but I can say from personal experience that life can be even better than it was before if you face the rebuilding head-on, no matter how much it might hurt.
Bipolar is such a selfish illness: My depression, my suicide attempt, my massive manic episode. But if your own personal experience is your sole focus, rebuilding will be tough. I learned this the hard way. I lost husbands, careers, friends, and a whole lot of money because of bipolar episodes. I cried, complained, and told anyone who would listen, “No one understands my pain!” This went on for years. The day I finally turned the focus off myself and onto other people and their needs, my life changed for the better.
The day I finally turned the focus off myself and onto other people and their needs, my life changed for the better.
Massive episodes—like the time I dumped my partner and took off for China on my own with basically no money—deeply affect the people around you, and it takes a lot for them to get over it. Expanding your vision to think about what other people in your life went through when you were ill and what they need during your rebuilding is critical. Even if you’re feeling fragile or ashamed, opening yourself up to the experiences of others and letting them know that you understand their perceptions can make all the difference. Here’s an example of what you can say to loved ones if bipolar just threw your life—and as a result, theirs—upside down:
I’m tired and worn out from these mood swings. I have no idea how I’m going to get through this, but I want you to know that I’m going to give it all I have. I have a diagnosis now and some answers. I know you went through something as well, and I promise that when I’m feeling better, we can explore how it was for you and what I can do to make things better. For now, I could use your help in getting this illness under control. I am thinking of you and your needs as well as my own.
Rebuilding a professional relationship takes guts, when all you want to do is hide under the nearest rock and stay there. Here’s an example of what you can say if you’re trying to salvage a career after a particularly nasty episode. Once again, acknowledge what it was like for the other person and put yourself in their shoes:
I know that my illness and the behavior it caused was very hard on you. I left work in a way that was probably confusing and very upsetting. I said things no one would choose to say to someone in a business setting. I finally have answers for why this happened, and I am open to any questions you may have. Please know that I understand that it’s now my job to keep myself well, and I have a plan in place to make sure this happens. I would like to talk with you about how we might work together in the future if I can show you through my actions that I’m getting the help I need.
In terms of relationships, especially with family and partners, people want and need—and deserve—to know how you’re going to take care of yourself when you say you want to rebuild your life. For myself, I watch my lifestyle closely, especially regarding sleep and relationships, and I understand my triggers and avoid them.
Saying the right things matters, but unless words are accompanied by action, people will tend to stay away. Whether you were just diagnosed or you need to rebuild once again, be bold and approach this with your head high. Build your self-awareness, and also your consideration of others. A life that seemed destroyed by bipolar can become a life where people want to work and be with you because you know who you are, what you need, and how to take care of yourself. This is your gift to the world, built out of your pain.
Sunday, June 5th is the third annual National HIV/AIDS Long-Term Survivors Awareness Day. it was same date, the year 1981 of the first reported case of the disease, now none as AIDS. This day raises awareness for people living with HIV, now 35 years later. It does this by opening up a conversation between ourselves,and our providers,in support groups, fellowships for those who are in recovery, also family and friends, and if you are open and accepted about your status, then from all walks of life.
Sharing life stories and shared experiences around aging heals, it does this by normalizing your new diagnoses in that it’s not just you who had oral surgery, had to see a neurologist, had an abdominal ultra sound, gone to hospital for surgery and have had to disclosed my HIV status. It’s not easy, but know it’s happening everyday as we’re growing older in the health care system that’s not the 95% gay clinic where you went for your quarterly labs decades ago.
I'm happy to share that today integrated care is being offered, that you are asked hows your mental health and visa-versa, as many are there for both my physical and mental health. But now I'm outgrowing the comfort of an LGBT Clinic as I'm requiring specialists as I'm needing tests and treatments outside the clinic. Thank God for the network of medical providers outside of the clinic who accept medicare and don't charge the 20% not covered, I'm able to receive the care I need.
You see for me, I’m disabled living on SSDI, on Medicare, and in public housing. It’s here that I’ve learned from my three dozen Grandmothers, Aunts and Uncles, all accepting of my being gay, my being HIV+, my being bipolar. I learn from them and they learn from me, there lies the awareness.
I call bingo, and this past week on May 30th I shared on the microphone, that as we say good-bye to mental health awareness month, this weekend I’m celebrating National HIV/AIDS Long Term Survivors Awareness Day. What a joy at age 57 to be that open and accepted on so many levels, the common denominator is we are all aging and all are on Social Security Insurance or Social Security Disability Insurance, (SSI or SSDI).
I hope my day to day story has helped you see how I make it work for me, sharing your story heals.
Like the Title of his Blog, "the Peers Life" Please welcome a fellow Peer, a reader and new friend whom met while reading my Op-Ed re-print in the National Alliance on Mental Illness this past December 1st, 2015, Worlds AIDS Day.
Like I say when I receive emails from readers, "Better than the Medications I take," is why I'm a Consumer Advocate for mental health, HIV and substance abuse, raising awareness and eliminate the STIGMA of all three. A tease from his Blog. "I’m an American/Australian man who has relocated from Lismore NSW Australia, a regional city centre to Tucson Arizona.
I’m a recently Certified Peer Support Specialist. I volunteer at NAMI Southern Arizona providing NAMI program and information regarding mental health held at various resource fairs throughout Tucson.
Prior to living in Tucson I left a wonderful mob of people called Grower’s. With the help of the GROW program I changed my life and I haven’t looked back yet. Thanks mates!"
How aging with HIV affects our brain function, our social support networks and mental health
For people living over 50 with HIV, whether you are a long-term survivor or recently diagnosed, we are the first group of people who live with HIV/AIDS and many co-morbidities as we age which are being studied and given considerate thought in accessing what our needs are both physically, mentally and socially. It’s ongoing. It would be helpful to them if we give them the opportunity to understand us better. The more we can share the more they have to work with. Living with HIV in later life presents the opportunity for doctors, psychiatrists, psychologists, neurologists and social workers to better understand how they can best serve us. We are the first amongst people living with HIV/AIDS to be studied. We can experience changes in our mental health, our neurocognitive abilities can change and our fine motor skills could become affected.
HAND or HIV AIDS Neurocognitive Disorder has 3 disorders with different degrees of impairment. We could have trouble with attention, memory, language, problem solving, decision making. We will experience none, some or many of the known symptoms which can and does affect our lives, emotional and spiritual well-being, our social support network, and family. It can come all at once or slowly. There is no set way for HAND to occur.
Symptoms of HAND can include confusion, forgetfulness, headaches, changes in the way you behave, problems with cognition or movement, pain due to nerve damage, and a gradual weakening and loss of feeling in the arms and legs. The only way to be sure is to seek an experienced neurologist who can eliminate other possibilities or causes. They may conduct neurological exams, perform brain MRI scan, possibly a lumbar puncture to analyze the cerebrospinal fluid (CSF). Depending upon the results a change may be needed in the type of HIV drugs prescribed. Please speak/consult with your doctor about changes to drug treatments.
There are other areas of our lives that it can impact. It can affect our ability to seek enjoyment being with people and lead us to isolate out of the stigma and discrimination we may face, how well we continue to stick to drug treatments and following our doctor’s advice. Our family and community support is important to maintaining physical and emotional wellness and connection to others. Finding people who can see past what we are experiencing and to focus on what our needs are. Having a good spiritual or religious belief(s) has a known positive affect on our well-being. Learning mindfulness and applying it into your daily life as a way to focus on activities we are able to do, not focusing on what we cannot. So you think you may be experiencing HAND or is it just depression? You may or may not be aware of it happening. This is where your doctor may wish for you to be assessed through neuropsych testing. It will provide the psychologist with a detailed assessment of your brain function/capacity. It can be followed up with time if your symptoms are remaining or have progressed. It’s an important tool to have in allowing people who treat us to have a bigger picture of where we are at. Because we are entering into uncharted waters there are no easy answers or that they have figured out how to treat us. All of us can experience similar symptoms with different needs. No two people are alike.
I would like to share with you my personal experience as a way to help you understand this important topic that is affecting people living with HIV/AIDS over 50. I have lived with HIV/AIDS for 33 years this past March. In early 2007 I was diagnosed with AIDS (HIV Encephalopathy).
In late 2006 I was working in a high stress job as a receptionist at a company who processes insurance claims. I talked on the phone every day, initiated new claims for the assessors to inspect damage claims. I was the beginning contact point, follow-up progress of claims, and filing of claims once completed. 6 months into my job I began to notice small things. Dismissible things like not remembering how to spell someone’s name while on the phone with a customer. I would lose track of my thoughts and keeping all of daily tasks in order. I live with a spinal injury and my left foot began to drag on the floor while I was walking across the floor. Over time I was finding it difficult to talk on the phone either losing track of what I was talking about or who I was talking to. My speech became noticeable to other people. They could see that I was changing from the person they recognized but not being able to put a finger on what it might be. My employer was unaware of HIV status. I hadn’t disclosed my status. I stopped working abruptly. I wasn’t able to function. I was finding everything too hard. I didn’t understand what was happening to me. I knew I lived with depression and this was way different. I felt like a shell of the man I was. No self-esteem, a good support system and medical team.
After consulting with neurosurgeons for possible neurological problems due to my spinal surgery, I was assessed by Professor Bruce Brew Director of Neurology St. Vincent’s Hospital in Sydney Australia. Based on his assessment I was advised that I had HIV Brain disease (HIV Encephalopathy) and spinal cord involvement. He gave my HIV Dr. a list of new drug treatment options and offered this as a way to begin my treatment. I was given all of the known HIV medications at that time (2007) that would stop the virus from crossing the blood brain barrier.
I began to see a psychologist who gave me ways in coping and learning new strategies to deal with such a radical change in my life. I learned mindfulness. I practiced it every day. My ability to think had stopped. I was losing the ability to say what I was thinking. It would get on the tip of my tongue and then disappear. I spoke with a slur/slowness. I began to use a walking frame. My cerebellum had been affected. It’s the part of the brain that affects walking, talking, thinking and speaking had been affected. My whole world changed overnight.
I currently live with peripheral neuropathy of my hands and feet with an unknown cause. Possibly HIV, drug medications, or long term nerve damage. I manage through diet, exercise, mindfulness and being gentle on myself. I had a counselor available to talk about what I was going through. It helped me overcome what I was living with. Emotion can both lift us up and also create for tense feelings which can increase pain, increase Blood Pressure and Depression.
One of the reason’s we are on disability is so that we have the time and ability to educate ourselves on our disability(s). Learn to take care of us so we can begin to lead a self-directed life. I have spent many years learning how the body functions because of my disabilities (physical, mental). When we know what is happening to us it can help reduce our fears of the unknown. Reducing our stress and anxiety about the unknown. Take one step at a time.
It was hard living with HIV Encephalopathy and thought I was going to die. My doctors hadn’t seen this before and were at a loss of what could be done. I took my meds and did the best I could each day trying not to fall apart emotionally. My relationship with my partner began to change. Our communication was difficult. I was reliant upon him to take me to doctors’ appointments, picking up my meds from the pharmacy, nearly for everything. I was given a visit by an occupational therapist to review what could improve my daily routine in my home making changes that were necessary. I learned a whole new way to live by dealing with the physical problems I was experiencing. Allowing for change is hard and so worth it for me. It brought me new insights and possibilities.
When we come face to face with death we find out what we are made of. In time I was able to change my HIV drug treatment. I had a new HIV doctor who had a different approach to how I was being treated and with a reduction in the number of HIV meds, I improved. My new HIV drug treatment consists of 2 pills taken once a day. It was a huge psychological change from taking my meds 2x day every 12 hours for many years. It was a godsend and welcomed. How something so small could create a big impact just by switching my HIV meds. I’m glad I made that change.
As I get older living with HIV/AIDS I am well informed about my disease(s) and how to stay well by being proactive about my life. I am concerned primarily about the normal old age problems. Each day I take steps that will help me further down the road to stay well. Part of going through horrific medical experiences for me is to learn from them. By taking steps in making good food choices & plenty of water each day, taking my medications each day as directed, going for walks staying active, having family in my life, connecting with people by volunteering and being a part of the community, whilst maintaining a good working relationship with my medical team gives me peace of mind that I am doing what I need to do to stay happy & healthy.
For me with all that I do for myself each day, allows me to know that I am doing the best that I can, to enjoy each day as it comes, dealing with my life’s problems using the coping skills I have learned along the way. I smile from knowing I’ve done what I can and accept that which I can’t. I am optimistic about the future. I have already come through the eye of the storm. You CAN too!
"Mental Health Awareness Month has been observed in May in the United States since 1949, reaching millions of people in the United States through the media, local events, and screenings.
Mental Health Awareness Month also comes to the United States via the Mental Health America organization. During the month, National Health America runs a number of activities which are based on a different theme each year.
In 2010, the theme was 'Live Your Life Well'.  'Live Your Life Well' was a theme designed to encourage people to take responsibility for the prevention of mental health issues during times of personal challenge and stress. The message was to inform the public that many mental health problems could be avoided by striving toward and making positive lifestyle choices in the ways we act and think.
The theme for the 2014 Mental Health Awareness month was “Mind Your Health”. A focus of that year's theme was to create a motivational effort that will put toward the goal of building public recognition in regards to the importance of mental health and to the overall health and wellness of those around us. The association hopes to inform United States citizens of the connection between the mind and body; and intends to provide advice, tips and strategies that will encourage people to take positive actions and protective measures for one’s own mental health, and whole-body health.
Mental Health America is not the only organization to run campaigns throughout May. Many other similar organizations choose to coincide with Mental Health Awareness month. National Children's Mental Health Awareness Day is one such campaign. This event is sponsored by the American Psychological Association (APA).
Its purpose is to raise awareness about mental illnesses, such as depression, schizophrenia, and bipolar disorder. It also aims to draw attention to suicide, which can be precipitated by some mental illnesses. Mental Health Awareness Month also aims to educate communities about psychological disorders, while reducing the stigma that surrounds them. The month came about by presidential proclamation."
In a recent article in POZ Magazine April 4, 2016 - Out of the Blue
authored by Mark Leydorf shares recent findings by Mary Ann Cohen, MD,
a clinical professor of psychiatry at Mount Sinai Hospital in New York
who identifies that people living with Depression, Substance Use and
Violence can lead to higher possibilities of contracting HIV/AIDS.
First let us break a few things down to make it easier for us to
understand what is known.
Mental Health as defined by the World Health Organization (WHO) as of
April 2016 is a state of well-being in which an individual realizes
his or her own abilities, can cope with the normal stresses of life,
can work productively and is able to make a contribution to his or her
Depression is the single leading cause of disability worldwide (WHO).
WHO has identified Depression as the single most Mental Illness
diagnosed. It costs the economy of the United States approximately
100 billion dollars a year.
For people aged 18-35 which includes high school students and college
students, during the course of 12 months 25% will have a diagnosable
mental health condition of depression or anxiety disorder. 10% will
be diagnosed with substance abuse. 75-80% of people that experience a
mental illness and substance abuse will never get any form of
treatment as stated by Michael Schafer of Arizona State University.
I have lived with HIV/AIDS since I was diagnosed in 1983. I have
lived with Depression for over 2 decades which later in my life
(August 2013) was re-diagnosed with Major Depression. It can be a
very disabling, difficult, chronic condition which limits our daily
life, work, and well-being. It is treatable and manageable with
medication and used in conjunction with therapy(s).
We have come very far in how we treat depression. The biggest
obstacle can be ourselves in not wanting change, not believing we are
depressed, feeling hopeless in knowing I have HIV and all of the
things I have to do to stay well is overwhelming to say the least. It
all can seem too much.
Living with HIV, Depression, and Substance Use leads to a revolving
door I have gone through. For me living with HIV/AIDS & Substance Use
was a way of coping through adversity and for many people in the LGBTI
community, a norm. Everyone does it, it must be okay. When I was
able to step out of the revolving door and decide to make change for
myself, by myself with the help of others, I learned to understand
depression by identifying my life stressors or feelings of
hopelessness, loneliness and began to put in place ways of changing to
overcoming my depressed state into one of empowering myself to do what
I need to do to stay well.
It was hard work and for me a new lease on life. A chance to live. A
chance to participate in life. To consider going back to work. To
have new friends in my life. To finding happiness in my daily life.
To love myself.
I have said over and over to myself and to others who would listen,
until I am able to understand mental illness myself it’s difficult to
address other physical/sexual/emotional problems that occur. If I am
mentally unwell it’s difficult to have the insight needed to deal with
other issues that affect my daily life. Exercise, diet, well-being,
employment, volunteerism, being part of family or community. Being
mentally unwell excludes those opportunities.
Eight Dimensions of Wellness
Wearing Red & Green, Statistics on HIV/AIDS and Mental Illness