Wellness

Okay, done with patients for the day. Heading to my rheumatology appointment, and then doing something I haven’t been able to do in years: going to read some books in a cafe :-)

https://platform.twitter.com/widgets.js

from Twitter https://twitter.com/DrMattDSW

Tonight is a high pain night. Thankful my first meeting is in the late morning, and then I just have my rheumatologist appointment, coffee with a friend, and one patient. It will be a slow day tomorrow #RA #RheumatoidArthritis #Myositis https://t.co/3d3MTIq02w

https://platform.twitter.com/widgets.js

from Twitter https://twitter.com/DrMattDSW

For those new: Hi! I’m queer & disabled. Beyond LD & Dyslexia, I have ADHD/TS/OCD/Depression/Anxiety, and Rheumatoid Arthritis & Myositis. I am a very much a member of the Disabled community. When I speak it is only of, and from my own experiences. YMMV.

https://platform.twitter.com/widgets.js

from Twitter https://twitter.com/DrMattDSW

Everyone else experiencing this allergy season as intensely as I am, or are you some kind of superhuman who can breath through your nose? #Allergies #AllergySeason https://t.co/9bwPLpTeCF

https://platform.twitter.com/widgets.js

from Twitter https://twitter.com/DrMattDSW

Amazed

Amazed

I am always amazed that the ‘master race’  – with all its flannel bravado – seems to think that us queer folks are weak.

As if we didn’t grow up in New York or Appalachia or Louisiana alongside you. As if we haven’t served in every war since humans began walking upright and out of their caves. As if we haven’t been steel and rig workers. As if we haven’t worked alongside you on the farms and in the coal mines. As if proficiency in wearing high heels and field stripping an M16 are mutually exclusive things.

We are not, have not been, and will not be afraid of you. We know you so much better than you can ever hope to know us. We are your daughters and sons. Brothers and sisters. We infiltrated you at our birth. We have been watching and learning from you for as many years as we have walked this Earth. We know your tactics. We know the size of your forces. We know you.

For every song lamenting the loss of ‘real men’ and their pickup trucks, there’s a dozen of you scared to go into a drag club, to shop in Harlem, to welcome in refugees, and to heal the sick…hundreds who wouldn’t recognize your Jesus Christ if he asked you personally to crawl through the eye of the needle to escape your narrow and hateful worldview.

For each Bible that’s come crashing down on our heads there are a dozen success stories of our people who made it against the odds, who have found love and community and happiness. We’re as tough as our full set of acrylic nails. We’ve had to be.

Go ahead. Try and silence us. You can’t. We’re loud as fuck. Make our existence illegal all over again. History loves to repeat itself and we know how the history books will remember you. We also know how they will remember us. Try and arrest us. We’re good with bricks and fabulous with spray paint.

Be gay. Do crime. Expect us.

Header Image by kalhh from Pixabay.

What’s Missing From Our Conversation About Suicide and Mental Health

The very short answer, on a larger scale, is intersectionality and Macro Social Work practice (and these of course include obtaining funds and access to Mental Health services, access to parity in Healthcare, a broad societal change, and more). The perhaps more honest answer, on a micro-level, is an understanding that most people (while meaning well) don’t know how to talk about suicide and mental health, and that no one response is going to work for everyone (though there are several responses that don’t appear to be helpful in general, or at all).

First, let’s address the reason why the National Suicide Prevention Hotline is shared so often (because this has come under fire a lot over the past week). The National Suicide Prevention Hotline is shared by professionals (like myself, and others) because a) it saves lives and b) in the hope that if someone can’t reach out on their own, someone else (maybe a trusted friend, family members, clergy person) will have had it saved in their phone. We are aware that some of our patients struggle to reach out for help. We are also aware that some of our patients are very good at reaching out when they need assistance. There’s no one response that will help everyone, so the information is shared in the hopes that it might help just one person.

I have been a Domestic Violence Counselor on the hotline when suicidal calls have come in. I have been able to transfer them to our Crisis Services center. I have also had patients who have adeptly been able to make use of hotlines (local and national) on their own. I also have had patients who have not been able to do so. We are working on getting as many resources out there as possible. We have a lot of work to do.

Secondly (and perhaps more problematic) if my feed this week has been any indicator, has been the Meme response that popped up this week (and I’ll go into detail for why this is problematic, in a moment). I am sure that most of you have seen these unhelpful memes (that are trying to be very helpful) pop-up across your feeds on Facebook, Instagram, Pinterest, twitter, tumblr, and more:

Unhelpful Memes Trying to Be Helpful

Source: The Interwebs

While I am sure the makers of these memes were well intentioned, these memes aren’t actually helpful to folks going through mental health issues who require assistance, or folks who are in need of immediate assistance in a mental health crisis. While they may make the poster of the meme feel good at the time of posting, at best they’re useless (though some friends may get the impression that it means there are those in their circle who care for them), and at worse they can put folks in a bad situation.

The reason that these memes are unhelpful is because it is unlikely that anyone’s door is always open, or that someone’s phone is always on. Most people have other things going on in their lives, and we don’t live in the the idyllic 1950’s-that-never-really-took-place where we all leave our doors unlocked these days. Phones get turned off, people have meetings and vacations, sometimes there isn’t food in the fridge (or there isn’t enough to share) because times are hard or resources are low, and people are also entitled to take time to themselves (even when a friend or a loved one is going through a crisis). No one, not even trained and experienced counselors, is ever on call 24/7/365. That’s not healthy. That’s not realistic.

One of the comments I’ve seen come up again and again and again this week are “why are neurotypicals posting the hotline and these memes, I tried to reach out, no one was there!” or “why didn’t folks reach out to me?” When someone posts something like this, and then doesn’t follow through it can erode years of trust, or damage a relationship permanently. It can also have negative impacts toward a patient seeking help in the future.

What I think the biggest (and very real) issue with this meme (and what it represents) is that most folks don’t know how to talk about mental illness, not in their day-to-day lives, and certainly not in a crisis.

Erie County’s Let’s Talk Stigma campaign is working very hard to break the stigma faced by those with mental health conditions (and there are many local and national movements, and countless research papers and textbooks written on the subject). So let’s say that somehow the above meme’s rang true, and someone knocks on your door at 2am. It’s one of your friends, and they say that they want to die. They have the the plan, the have the means, and they’re ready to end their lives. Do you know what to do? Do you know what to do without involving the police? Do you know when to involve the police? Do you know what to do if it’s someone with a disability and the unique circumstances that surround the Disabled community’s intersectionality with suicide? What about someone who’s a person of color or who’s in a marginalized community – are you prepared to put yourself between the police officers who might show up if you have privilege? At 2am do you have the tools necessary, in your personal toolkit, to handle this situation? Do you have the spoons necessary?

The answer is probably not. And that’s okay. That’s really human actually. But in order to make change, I think we need to recognize our own humanity (and our own limitations) in that maybe not everyone is going to be able to have these conversations just because they’re a nice person, if they haven’t been trained to have them (and for some people, maybe even being trained to have them isn’t the best idea – these conversations aren’t for everyone). For the past year, I’ve done Lethality assessments on a near daily basis. I do them in each counseling session with my patients, in every single assessment session, during every single intake, and during every single triage session. Talking about suicide, suicidal ideation, and self-harm is hard. It’s something that you need to be trained in, and something that you need to practice.

So if Meme’s aren’t the answer, then what do we do? How do we learn how to appropriately talk about Mental Health? How do we learn how to appropriately talk about suicidality, self harm, and homicidal ideation? How can lay-leaders and community leaders and coaches and teachers and parents and friends and your “average Joe” make a difference? The answer is Mental Health First Aid USA. Mental Health First Aid is an evidence based practice that was developed in Australia, and is managed by the National Institute on Behavioral Health here in the United States. It teaches non-clinicians “interventions for panic attacks, suicidal thoughts/behaviors, non-suicidal self-injury, acute psychosis, overdose or withdrawal from drugs and/or alcohol, and reactions to traumatic events, and other emergency situations.”

Over two days you can learn what to do when you get that 2am phone call or knock on your door. I can say, emphatically, that I have used Mental Health First Aid to save lives while I was going through the Social Work program and earning my MSW. The hope is to have as many people trained in Mental Health First Aid as are trained in CPR by the year 2020. So if you’ve been moved over the past two weeks by some high profile names in the news, If you’d like to know what to do, and to be prepared in an emergency, I would encourage you to please go to https://www.mentalhealthfirstaid.org/ to learn more, and to please consider bringing a trainer to your school, place of work, church, synagogue, or mosque, and to help your community be that much safer.

Memes don’t help. Evidence Based Practice, and engaged and well trained community members do.

Fuck Fuckity Fuck Fuck Fuck

That feeling when you're in bed, and over the course of two or so hours you feel your muscle strength totally leave your legs and your hands, and your fingers…so you do your usual tests, the ones you've developed over the past 8 months…and you realize you've lost your ability to snap your fingers, wiggle your toes, even moving around in bed to adjust position is complicated, and you know in about 30 more minutes your legs are going to be out to lunch…but you need to be a functional adult in a few hours for work…miles away from a name for whatever this is that robbed you your mobility.

Neurological/Rheumatological Fuckery

So quick medical update: I’m in a flareup again (like, not quite acute…but reaaaaaaaly close…like if acute is a 10, I’m at a 9.7). Walking is exceedingly difficult, muscle/pain weakness are making me ambulate like a toddler (but I have Zappy the Wonder Walker, for which I’m extraordinarily grateful).
 
My PCP & Neurologist both think there’s more to the diagnosis than Fibromyalgia, so my Neurologist is writing a letter to the Mayo asking for another consultation when I go back there in August for the Fibromyalgia Clinic.
 
However, thanks to adaptive technology (my Rollator Zappy, and voice-to-text software) I am still a happy (if uncomfortable) camper. Added bonus though: when orientation tour groups gawk, you get to tell them that you’re part of an anti-aging study being conducted on campus, and that things are going great, they just haven’t figured out the walking part yet.

(Not Quite) Back to Square One

Just finished up at the Neurologiats office. They don’t think this is just Fibromyalgia for a lot of reasons. Chief among them are that many of my symptoms are far beyond the scope of Fibromyalgia. Also, whenever I’m in a flare up/excessive pain, my CK levels are elevated indicating some kind of muscle issue (“It’s not all in your head!”). ”

My doctor was also like “and when you were there you were on high doses of Prednisone” and I reminded them that “Yes, and I was also on two months of resting because I was on disability…” (and I’ve been saying the “hey, I was on high doses of steroids” thing for weeks now. 
Anyway my neurologist is writing a letter to the Mayo explaining his thoughts and observations, and asking them to take another look. He believes, like my primary care physician and I do, that we’re missing a part of this diagnosis and that the Fibromyalgia is comorbid with something.

Back to the Mayo Clinic we go…and if they won’t give us an appointment, to Johns Hopkins.