Study: Mental Health Professional Shortage Areas

Did you know that 34% of Americans live in areas with a shortage of mental health providers?

One group is looking to study this in a project titled Understanding Pathways to Care For Individuals in Mental Health Professional Shortage Areas, with Investigators Dr. Munmun De Choudhury and Dr. Neha Kumar. This project is a joint research initiative between the SocWeb and TanDeM Labs at the Georgia Institute of Technology, along with various partners and stakeholders from community-based mental health advocacy organizations.

What Am I Being Asked To Do?
You are being asked to be a volunteer in a research study. This page will give you key information to help you decide if you would like to participate.  Your participation is voluntary. As you read, please feel free to ask any questions you may have about the research.

What Is This Study About and What Procedures Will You be Asked to Follow?
The purpose of this study is to better understand how people find access to mental healthcare. You will be asked survey questions about yourself, as well as the different resources you use to feel better when you are not feeling well.

If you decide to be in this study, you will be asked survey questions about where you live and how you have sought support for mental health concerns. You will not be compensated for participation in this study

Are There Any Risks or Discomforts you Might Experience by Being in this Study?
Survey questions deal with your mental health background and may touch on topics you do not want to discuss. You are not required to answer any questions and choose to not answer and move to a different question or choose to stop participating in the study at any time.

What Are the Reasons You Might Want to Volunteer For This Study?
You are not likely to benefit in any way from joining this study. However, your participation in this study may assist researchers in understanding how people in resource-limited areas find access to mental healthcare.

Study link

Questions about the Study
If you have any questions about the study, please reach out to Sachin Pendse.

photo of a laptop on a white desk against a window with white blinds drawn; black transparent overlay with white text: "Is Telemedicine Right for Mental Health?" and "Not Standing Still's Disease"

Is Telemedicine Right for Mental Health?

Given a shortage of providers and a lack of insurance coverage, it’s only natural to consider telemedicine as a step to increase mental health care for thousands. Patients are able to get help conveniently and on their own terms. This increases accessibility for patients like me who struggle with mobility issues or live in rural locations.

Services like Talkspace allow for more access to therapists, regardless of where you’re at. Many providers appreciate the ability to meet patients in their environments, feeling out stressors patients encounter every day. Talkspace isn’t the only teletherapy service. Similar standalone companies include Better Help and 7 Cups. The majority of these services only provide therapy, not medication management — which means many patients who need medications to manage their mental health are fricked.

Unfortunately, there are drawbacks to teletherapy apps like Talkspace. These third-party apps aren’t necessarily therapist-friendly. Even when children are in danger, there is no easy way for therapists to access patient data and use it to alert local authorities. Therapists are treated as contractors with little input, high expectations, and low pay. Additionally, there are concerns that Talkspace isn’t following various laws and standards.

I’ve tried Talkspace. At first, I felt like it was a great option for me. I’m constantly on the move but always have my phone on me. It was one more appointment that I didn’t have to fit into my schedule. I got along really well with my therapist who knows a lot about sex education and appreciated the work I was doing. Soon, though, I started to avoid texting my therapist back. It felt like I was being talked to as a peer because of my work — but that’s not what I needed.

In my last traditional therapy setting, my therapist was too motherly and concerned about me even learning about BDSM and kink — something that’s a part of my job to talk to others about. She also would’ve been incredibly against me being flogged which is something that has stopped my fibro at its worst.

After trying both, I believe part of the problem is talk therapy (including interpersonal and cognitive-behavioral or CBT). We’ve made it the norm, but it’s something that isn’t very effective for many people and conditions. On top of that, abuse survivors like myself will do exactly what prey animals do when injured — avoid even bringing up the very thing they need to work on.

Just like talk therapy doesn’t work for everyone, neither does teletherapy. It’s important to be mindful of how well long-distance therapy may work for you. I also highly suggest researching potential companies you’re interested in utilizing before making the move.

Stop Blaming Mental Illness for Violence

kirsten with purple short hair looks sad but you only see her left eye and side of her face; a purple text box with white text: "Stop Blaming Mental Illness for Violence" and "Not Standing Still's Disease"
This post is based a bit on a Twitter rant I went on this morning. (BTW stats I’m citing can be found at NAMI, NIAMH, CDC, and SAMHSA – a post will go up on Chronic Sex tomorrow with more info.)
It’s Mental Illness Awareness Week. Instead of breaking down stigmas, many of us are having to avoid media spouting ableist rhetoric. Hell, even Jimmy Kimmel’s monologue from last night that’s gotten so much praise is full of ableism.
Did you not recognize the ableism in that speech, or do you not care?
Parts of Kimmel’s monologue last night were good. However, his rant against the lifting of an ableist bill was troubling. Why? Those of us who are mentally ill are far more likely to be killed than to kill. We are up to four times as likely to be the victim of a violent crime than to be a perpetrator of one.
As someone who is mentally ill, I am tired of people falling back on mental illness as the cause of all violence. This is especially true this week.
26% of American adults have a mental illness, and 25% of those are ‘serious’ – including me and my PTSD-riddled noggin. Around 70% of adults with mental illness also have a non-mental chronic illness. Living with both lead to a 4x chance that you’ll die early.
Those of us within the queer or LGBTQQIA2+ community? Over twice as likely to struggle with mental health. About the same can be said for those of us with physical health issues. Mental illness race breakdown in adults:
  • 20% – white & black
  • 16% – Latinx
  • 14% – Asian
  • Nearly 30% – Native Americans & Alaskan natives

 

Society wants to blame us mentally ill for bullshit. They refuse to address the roles that Adverse Childhood Experiences (ACEs) or socioeconomic contributions to mental illness. They want to blame our brains for fucking up their world but refuse to address or acknowledge marginalizations that contribute to mental illnesses.
Marginalizations lead to huge barriers in getting mental health care, including even a diagnosis (let alone treatment), Discrimination (racism, homomisia, etc), access, insurance, poverty, transportation, stigma, & language barriers all contribute to a lack of treatment.
Statistically then, those of us with a ton of marginalizations should be the ones committing violent crimes – but we’re not. 95% of violence in the US isn’t linked directly to mental illness. Mental health is only brought up when the offender is a white male. Otherwise, racism and Islammisia come into play.
People need to recognize that some people just fucking suck, regardless of mental health state. As Michael Caine’s Alfred said about The Joker, “Some men just want to watch the world burn.” Let’s take that further, too – either they want to watch the world burn or they give no fucks about anyone else but themselves. Last I checked, being a selfish asshole was not a mental illness.
Awful human beings exist, regardless of their mental or physical health state. Being a bigot and wanting to murder people isn’t a mental illness issue as much as it’s a societal issue.
My mental illnesses don’t make me awful any more than having short hair does.
This is supposed to be the one week where we can speak openly about stigmas we face as mentally ill people. Instead, we get to fight ableism from all sides. It’s ridiculous and harmful.
Stop with the ableism and harming our communities because you don’t grasp humanity’s failings. All you’re doing is contributing to the stigmas we’re trying to fight, making it harder for us to live full lives. You’re perpetuating violence against us as you promote ableist ideas.
Please just stop.

 

My Mental Health Goes to Shit Sometimes #RABlogWeek2017

wooden background tinted darkly with white text: #RABlogWeek2017 - My Mental Health Goes to Shit Sometimes - Not Standing Still's Disease
It’s RA Blog Week! Today’s prompt is: Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?
I’ve talked a lot about how my mental health is impacted by being chronically ill. It’s a process that we all go through as patients.
It’s one of the most difficult struggles we face.
My biggest struggle with mental health is completely linked with my physical health. I wind up pushing through and not asking for help I need. Obviously, part of that is being an abuse survivor, but a lot of it is because I’m incredibly independent (read: stubborn). I’ve always wanted to take care of things on my own because that was my childhood. When I cannot do things on my own, I usually just struggle through as best as I can or forgo whatever activity.
I get angry and shut down emotionally instead of communicating my frustrations. I know that sometimes, it’s because sharing how angry I am with my body will lead to crying – something I absolutely hate to do… mostly because of how I was raised.
Crying was showing weakness. It meant I wasn’t being strong or resilient or persevering. I know now that this is bullshit, but it’s a hard thing to change.
selfie of me with short hair; in the background are posters of the skeletal system and muscular system; I look tired/annoyed/run down and am wearing a hospital gown, though you only see a snippet of it on my right shoulder; there is a filter on this photo that makes it look distressed and discolored
The unpredictability of living with chronic illnesses is detrimental to my mental health as well. I can’t plan effectively when I don’t know how my body will react.
I was just in New York for a trip. I had tons of fun and spent time with some of my favorite rheummates. Even though I’ve started to buffer my trips to give myself time to recover, that doesn’t always do the trick. Sometimes I only need a day and other times I need a week – and there’s no real way to predict that, even when I get home.
It’s hard to know if I will be up for appointments like physical therapy, let alone to clean the guinea pigs’ house.
That’s really hard, especially being a planner.
It’s taken me nearly thirty years, but I’m starting to learn how to communicate my pain more effectively and ask for help. I’m sure it’ll be a continuous process until the day I die. Hell, what person is good at this without illness?
Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

 

Mental Health and Chronic Pain in Childhood

Before I start this post, let me mention a few things – there’s a lot of talk of dying early, suicide, abuse, etc, in this post. I am fine – simply describing much of how growing up with chronic pain conditions can be and, indeed, was for me.
One of the things that I’ve struggled with, starting as a child all the way up to today, is the combination of chronic pain and death. Indeed, it’s one of the big issues in the chronic illness world – we often fail to address how mental health can play with chronic illness and pain.
About a year ago, I came across the Tumblr post below:
Tumblr post from user Bakrua (black text on a white background): Being mentally ill + suicidal at a young age (before 18) is. strange, because you grow up with this idea that one day you'll finally snap, turn off, be brave enough to kill yourself, so you don't really plan-for the future. adulthood - further life, it isn't for you, nor do you feel included within the future of it. it isn't.. it isn't part of your life plan" new paragraph: "and then before you know it you're 18 and you're an adult but you never thought you'd get this far and sure it's great that you're still alive you guess but also. you feel so alone + lost in a world you never expected or planned to be a part of."
It really hit home for me.
When I was young and we didn’t know what was going on with me, I made my peace. I was sure that I was going to die soon and I was somehow less scared of it than I am now.
I think I was also more at peace with the idea that I was in no way in control of my destiny. I certainly wasn’t a godly child but understood more about how my physical body is more in control than my brain. Obviously, I would have been sad about passing away so young. I would’ve missed all the time I’ve gotten to spend with my sister, the people I’ve come to know, and all the animals I’ve loved and taken care of.
Since I was so prepared to die early, I didn’t really plan for later in life. Even after the SJIA diagnosis, – I knew that this was a scary disease from what I had read as a seven-year-old with a dictionary beside me. Hell, I figured that if my SJIA didn’t get me that my abusive mother somehow would. She certainly was good at pushing buttons to help people make decisions that weren’t the best for their health. But that’s a story for a different time.
I knew that other people didn’t deal with exactly what I did. Still, I felt as though I was handling this very poorly compared to how others might. It’s a very common thing for kids with chronic pain to think. A few years ago, I read a book that discussed fibromyalgia in children and nearly every kid expressed being ‘bad’ at handling pain they thought everyone dealt with.
It’s one of those initial ways we experience ableism – we think we do poorly at handling issues.
In reality, just like with people of any age, children are just trying to make sense of what’s going on in their bodies and their lives. We can’t control what’s happening to us in a lot of ways, both because of our ages and our illnesses. Many adults don’t take what we say seriously, either, which can further issues like depression – especially if we’re isolated and abused in our youth as I was.
Now I’m nearing 30 and I have no idea what I’m doing. Sure, some say that’s what being an adult is like, but not in the way I feel it. I have few plans because I just never thought I’d get to be this old. Because of T’s struggles with depression, he’s in the same boat. It’s not easy for either of us – and can cause issues within our relationship.
 
See, the way I grew up affects everything in my life – how I handle my health fun, how I treat others, relationships, etc.
If you have a child who deals with chronic illness, it’s imperative that they begin to see a therapist to work out their feelings. They need validation outside of the family as well as a safe space to vent. They also are going to need a lot more help than any parents, no matter how awesome, can give them. A therapist can be a wonderful person for further mental health referrals.
If you live with chronic illness, whether diagnosed in your childhood or later in life, please see a therapist or other mental health professional. It can mean the difference between life and death.

 

It’s Mental Illness Awareness Week…

Mental Illness Awareness Week has been around for over 20 years. It’s a week where we are supposed to take time out to examine how the stigma we associate with mental health issues hurts the greater cause of improving mental health.
Instead, we already got to deal with Donald Trump belittling Post Traumatic Stress. On the plus side, we saw Joe Biden get more emotional in his response than we’ve seen in a long while.
Recently, Knott’s Berry farm had an attraction as a part of their Halloween event that helped continue the stigma facing those of us living with mental health issues. They shut it down in the wake of the uproar.
We also continue to see people dealing with mental health issues and other illness issues being killed by police instead of incapacitated.
Yes, this is a week where we should be thinking about these stigmas, but why do we do this for only one week? Why aren’t there more people focusing on this aside from those of us directly affected? Why do people only seem to care when certain events arise and remind them of this stigma?

 

Leaving My Job

As of May 27, I will be leaving my current job.
It’s a bit of a bittersweet thing. I used to really enjoy my job and my ability to help these physicians to help their pediatric patients. I was given opportunities to speak with various higher-ups about patient engagement and MedX.
Lately, the environment has changed greatly and I’ve been left feeling very torn.
I don’t enjoy this job anymore and that, coupled with my never-ending fibromyalgia flare-up, was already making it hard to get up and get to work. Late night or early morning meetings didn’t help the situation.
I’ve tried to stick it out for a while here, but it’s becoming increasingly obvious that missing a day a week due to illness isn’t making me very popular. There is a lot of frustration, for me and for others, at my absences lately.
I went from feeling very included to not having that anymore and it’s rough, especially as I felt I was finally hitting a groove about three months ago.
C’est la vie, I suppose. I know I’m worth more than this, though.
I do not currently have another job lined up.
Normally, this would scare me, but T’s aunt left us some money and I will be able to take some time off to try to get this fibro under control. I’m hoping to work part-time after a few weeks or even launch Chronic Sex as an official business.
I will be attending a few interesting conferences in the next several months, including presenting on sex with chronic illnesses at a few.
If you know anyone looking for a workaholic trying to reform herself, give me a holler!
In the meantime, expect to see more posts in June here, at Chronic Sex, on Medium, and at my official site.

 

Can you be depressed and function at the same time?

In the past, some have questioned if I can be depressed, have anxiety, or deal with Post Traumatic Stress while I still accomplish so many things.
Via Tumblr
Depression, Anxiety, and PTSD have been, historically, some of the fuelers of the greatest things we’ve known – paintings, music, plays, books, etc.
Van Gogh was super depressed. The dude cut off his own ear.
Self-Portrait with Bandaged Ear
Come on.
Yet, he created some of the most beautiful art ever known.
Other notable awesome people with mental health issues include:
  • Michelangelo: OCD.
  • Tchaikovsky: Depression.
  • Beethoven: Bipolar Disorder & Depression.
  • Edgar Allan Poe: Depression.
  • Johnny Depp: Panic Attacks.
  • Isaac Newton: Bipolar Disorder.
  • Howie Mandel: OCD.
  • Demi Lovato: Bipolar Disorder.
  • Abraham Lincoln: Depression, Anxiety, and PTSD.
  • Buzz Aldrin: Depression.
  • Ernest Hemingway: Bipolar Disorder.
  • Marlon Brando: Depression.
  • Darrell Hammond: PTSD.
  • Carrie Fisher: Bipolar Disorder.
  • Calvin Coolidge: Depression.
  • Stephen Fry: Bipolar Disorder.
  • Kurt Cobain: ADD & Bipolar Disorder.
  • Agatha Christie: Depression.
  • Teri Hatcher: PTSD.
  • Jacqueline Kennedy Onassis: PTSD.
  • Whoopi Goldberg: PTSD.
  • Beyoncé: Depression.
Here we have world leaders, scientists, and entertainers. These people have changed the world despite their mental health issues.
Many of the people on this list are or were very open about their struggles with mental health as well. We discuss our mental health issues because we want others to stop feeling alone or like they have no one to turn to. When mental health issues are so prominent in the chronic illness community, why wouldn’t we discuss these as being just as valid and debilitating as other chronic illnesses?
Isn’t that the point of being a patient activist and blogger anyway?
Via Wisdom to Inspire
If Abe Lincoln can run the world, help fight a war, care for his wife’s mental health issues, and raise his kids while living with the very same three conditions I endure daily? I think I can conquer whatever lies ahead of me.

 

Musings on My Personification of Arthur

I have often said over the last few years that I feel grateful for being sick since childhood. I don’t remember living really without the limitations that I have grown up with, even though they do change enough to irritate beyond belief. I have multiple chronic diseases but my fibro is currently the worst offender now that my SJIA is mostly under control.

That brings its own challenges, though, like feeling that I’ve lost a huge part of me. Arthur, as I’ve always called my SJIA, was much like a twin. There is an emptiness that comes when the thing you’re closest to is gone, especially when you have a tendency to personify it.

There is a mix of joy for some semblance of pain relief, sorrow that he’s not around, and guilt that I’m doing so well while children I know have been in and out of the hospital seriously ill and fighting for their lives.

If Arthur had come along later than kindergarten, would I feel differently about him? If I grew up in a home without abuse, would I have gotten so attached to him, to that familiar pain?

I think that I clung to Arthur and used the physical pain as a distraction from my emotional and mental distress from my childhood. Another child in a similar situation may go to a friend’s house as a source of respite, but I didn’t have friends. I was basically not allowed to have them because I could share something that happened and I’d be taken away from my mother.

 

That threat was always there.

 

Arthur was that escape for me. Stress and emotional distress bring on flares so it was easy for me to be distracted, to escape into the pain that was most comfortable to feel because I didn’t know different.

 

I did know that my household was awful, that this was not how things were supposed to be, but I didn’t know a life without Arthur.
Courtesy of Quotes Gram
Arthur, my security blanket, is tattered and worn.

 

I have to actually face everything I grew up experiencing, both as an adult and as the child in me.

 

I know I’ll be better for it and I’ve already made so much progress…

 

There are too many times where I want that blanket back, though.

 

Opiates for pain relief: what patients have to say

Recently, there have been many discussions centered around opioids and other pain medication. This ranges from the speculation that opioids are a gateway to heroin addiction to the overprescription of these drugs. As a former Oregonian, it saddened me to see Senator Ron Wyden embrace the CDC prescription standards for opiates. These guidelines do a world of harm to chronic pain patients.
 
There is no denying that there are people for whom these medications are bad news. The costs to employers specifically can be astronomical. Heroin use rates among younger people are on the decline, so who are primary abusers and users? Middle aged white people
 
If you become addicted to opioids, you *may* be more likely to move to illicit drugs. 
 
What about those of us who need to utilize these pain medications for relief? Those of us who can stay on a consistent dose without increasing, as those with addiction issues often do? We are often labeled as ‘dependent’ but that’s only due to the positive impact made on our lives due to these medications, that we do rely on them to be able to function, but that’s not the same way an addiction presents.
 
According to the National Safety Council, “Studies have shown NSAIDs are just as strong as the opioids.” However, some the information cited involves combining multiple NSAID types – something that most of us in chronic pain are told NEVER to do in order to protect a liver that already works incredibly hard to process other medications. Also, the FDA may not believe the benefits of those outweigh the risk either.
 
As someone who constantly takes NSAIDs, I can certainly say that they do not provide the same level of relief to chronic pain patients. I’ve been taking NSAIDs since age 7 due to my Systemic Juvenile Idiopathic Arthritis. I’ve had to switch NSAIDs a few times due to them losing effectiveness and harming my GI system.
 
As my friend Mariah points out, better care has led to an increase in opioid prescriptions. She discusses a session at the American College of Rheumatology 2015 Conference where two physicians discussed the use of opioids for chronic pain not related to cancer. One physician remained staunchly against the prescription of opioids for chronic pain patients while the other believed in using them depending on the patient, as refusing them can deny patients the pain relief they so desperately need.
 
Many questions come up during this piece for me. Why is chronic pain unrelated to cancer being compared to that related to cancer?
 
With opioids, my friends with rheumatic illnesses can move around enough to keep pain at bay, sleep at night in order to work a normal 9-5, or spend time enriching the lives of their children instead of sitting in pain.
 
I asked some of the patients I know to share a bit about their journeys with pain medications:
 
One patient in Texas said: 

My Dr said that she wants to physically see me each month to get my script. I don’t have insurance and can’t afford to do that each month. Our free clinic won’t write for them either… Our health care system sucks! Not sure what I can do though.

Another in Texas: 

I couldn’t function without them. My GP prescribes them. My old rheum would drug test if you wanted him to prescribe. Well, I also smoke marijuana and that would have me booted from the practice altogether. I get them where I can bypass that.

Yet another patient in Texas: 

If I didn’t have spousal support/alimony, I wouldn’t be able to afford seeing a pain specialist. It’s so freaking expensive!

A patient in the New York area:

I have only ever been prescribed opiods in the ER or by a GP in a flare. I love my rheum but he doesn’t do pain management of controlled substances because of the current laws and how much more difficult it will make his practice and how many fewer patients he would have because of the increased visit frequency required.

One pt in South Carolina: 

I’m on Diluadid 2mg twice a day. It managed my chronic arthritic pain extremely well at first, but all it does now is make me sleepy. Does it manage my pain? Yes and no. When I’m flaring there is NOTHING that makes my pain go away. Not even high dose pain meds given by IV in the hospital. Nothing. That’s the way my arthritis is. Intractable. So every thirty days I pick up my prescription for a 30-day supply and muddle through another month of trying to manage my pain without really managing my pain!

Me?
 
Opiates tend to not work well for me because of my allergies, frankly. I can’t do Tylenol at all, so hydrocodone on its own is what I can take – Zohydro. It’s strong stuff and, frankly, I reserve it for the worst pain I have. There are types of pain that doesn’t fully touch for me, like the bursitis I had this time last year that required a few bursal injections.
 
 
Still, it took care of the pain associated with limping and favoring one leg over the other. It allowed me enough of a break to be able to sleep some – even on high doses of prednisone. I was treated like a drug addict and criminal picking them up from Walgreens, but at least they didn’t turn me away.
 
For that, I am grateful.
 
I take Lyrica, another controlled substance, daily. Before I started on that, my fibromyalgia was so bad that I was missing 1-2 days of work within a two week period. My allodynia was so bad that I couldn’t wear clothing – all I could wear was my fleece zebra blanket.
 
Unfortunately, that is not proper work attire, save for when I’m blogging.
 
Now that I’m on a good Lyrica dose, I do okay. Currently, I’m in a fibro flare and have missed four days of work in a month’s time due to it, but before that I was doing pretty well.
 
Without my Lyrica, I’d be unable to work.
 
 
I also wouldn’t be able to get the physical contact I so love from my husband.
 
Other young people I’ve spoken with have shared how they are often forced into signing contracts, jumping through ridiculous hoops to get any semblance of pain relief. We’re sent to pain management clinics where we’re told the solution to our pain is to lose weight, exercise, stop eating poor food, and think positively. We come to fear those visits, to fear the times we have to utilize the emergency room due to overwhelming pain. 
 
This leads to increased pain and mental anguish as well as costing the healthcare systems more in the long run. When we chronic pain patients disregard our own pain, it can lead to hospitalizations, surgeries, and worse.
 
Chronic pain patients are often female. Due to our gender, we are not believed about pain as it is. We need to examine, as well, the way we approach racial issues and pain relief… and poverty, too.
 
Do you want to know why we may seem desperate? 
 
We’ve seen our (former) primary physician who laughed an abscess off as a pimple, wanted us to keep taking our immune-system-suppressing medications, and told us to grow up.
 
We’ve researched pain and learned about how negatively it impacts all aspects of our lives, from interpersonal relationships to even how intelligent we are.
 
We’ve been interviewed and had people belittle us about our pain relief.
 

Since there is no way to know who will become addicted, shouldn’t the focus be on supporting social services that help to check on people living with chronic pain who are on these medications? Shouldn’t we be embracing conversation starters like the recent Super Bowl commercial about Opioid-Induced Constipation instead of making poop jokes & assuming everyone on pain medications is an addict? Should health activists be taking over important areas in other healthcare issues to try to make a point to the Bill Mahers of the world? (Hint: no).

Approximately less than 9% of people who have a substance abuse problem abuse opioids. Some of them are even physicians. What about them? Do they not also deserve pain relief? Our respect, love, and help instead of being vilified?