Wednesday, December 7, 2016

Mental Health Pet Peeves

In the mental health community, we face a lot of stigma. Some of it is overt. People calling us crazy or mental or insane. People saying we're dangerous, violent. These people, while they frustrate the hell out of me, are sometimes easier for me to deal with. I pull out statistics about how those with mental health conditions are ten times more likely to be victims of a violent crime than perpetrators. I tell people how I run a business and work a part time job, have recently written a novel in my "spare time", and have served on numerous boards of directors, to name a few accomplishments. This tends to make people realize perhaps I'm not as "crazy" as they would like to think. Or they do, and I tell them where to shove and move along because they've decided to be closed minded and nothing I can say will change that, so they aren't worth my time. But the people that don't get what they're doing are the ones who really get to me. Because that is how stigma and ignorance disguises itself in a pretty little helpful bow, and continues to be perpetuated. Here are a few of my top mental health pet peeves.
  •  "Just pray about it." Ok, first off, I've been black listed by the Catholic church for living in sin for the last umteen years (divorced, not annulled,etc etc) and quite frankly it pisses me off that I'm counted as much of a sinner as a murderer or a rapist simply because I left an unhealthy relationship. But all of this is besides the point BECAUSE MY ILLNESS IS NOT A SIN OR A PENANCE! I jokingly call it the gremlin in my head, but that's a joke. Because it's so ridiculous that a separate being would be actually possessing my brain that I can joke about it. Praying, if I were religious, might calm me. It might give me some sort of comfort. If I were religious. Which I am not. Now, to be clear, if you are religious and want to pray that I'm feeling better, by all means, go ahead. It's how you feel you can help, and I truly appreciate that you want to help in some way. I'm not telling you not to pray or believe, and I appreciate you doing what you can to help. Who knows, maybe it'll work and I'll become a believer again.  But please, don't tell me the only thing that I can do to help is pray. I respect that it's your thing, but it's not my thing. And I'm not looking for a miracle. 
  • You're a pawn of the pharmaceutical/doctor industry. They're making you sicker so you buy the drugs and they get rich.  Ok first of all, did you witness the first 30 years of my life? Did you watch me at 2 years old in hypomanic episodes begging my parents "make it stop, make it stop." But I'm just fine off my meds?  How exactly do you, who is not in my head or my body, know that?  Let me set you straight: my meds, and the meds of so many others, are life-saving. When you have a potentially fatal cancer and choose not to take medication, please, come to me and show me how you've magically healed on your own. Then we can talk. 
  • Oh I don't need medication, I've cured myself with these herbal supplements and exercise. Well hoody hoo for you. You are not me. You're not inside my brain. I have a bachelors in kineseology, worked in corporate fitness for five years, and am a certified personal trainer and fitness instructor. If exercise could cure me, I think I'd be fine and dandy by now. I'm honestly glad that works for you. You're lucky. Me, not so much. It does help me at times, but it doesn't cure me. Nothing does. I have a chronic illness that currently has no cure. 
  • Just relax/chill out/calm down (during anxiety/hypomania). *%&$&*$%&#$%*$% You. If I could, I would. And here's a tip: never, in the history of telling people to calm down, has telling someone to calm down actually made them do so. In fact, it does the reverse. 
  • Just focus on the positive more. Be more grateful.  I'm not ungrateful. I know I have "no reason" (as you put it) to feel so awful, worthless, terrible, hopeless. I know there are starving children in Africa and that so many people are more sick, or have it worse. But I do, actually, have a reason. It's called a medical illness that screws with my brain. And now, thanks to you, I simply feel guilty about having this illness, and more like a giant piece of shit than I already felt. 
  • Why are you depressed? You have a good life. If I asked you why you couldn't just stop having cancer because you have a good life and *should* be healthy, I'd look like the biggest asshat on the planet. When you ask this, so do you. 
  • I  avoid people who are emotional/dramatic. Every time I see this in anyone's status/profile/etc I run like the wind. Because this makes me feel like I can't be myself if I'm having an overly emotional day, and like it's my fault if I am. Like it's not an illness that makes me this emotional but a choice. It makes me feel like a burden. And I don't want to be a burden to anyone. I'd rather be alone. 
  • Happiness is a choice. Ah, well, no shit?! If only I'd known! All this time, I've been suffering from a lifelong illness when I could have just decided not to be depressed! I hope you can sense the sarcasm. If happiness was a choice, approximately 16 million Americans would not be living with Major Depressive Disorder (source here). Trust me, we don't want to be depressed, and we certainly never chose this on purpose. 
  • You can't control what happens to you but you can control your reactions to it. Clarification: in a perfect world, I agree. But in a perfect world, 16 million Americans would battle major depression either. By nature of my disorder, my brain makes it increasingly difficult to control my reactions, and sometimes nearly impossible. If it helps make this a bit more clear, my meds are actually used primarily for seizures. Basically, I'm having a seizure- like reaction in my brain that manifests itself emotionally/mentally instead of physically. And if you've ever witnessed someone having a seizure, you understand the lack of control. If I could not have an anxiety attack or panic attack in public, I would.  Because nobody likes being stared at and steered clear of in public. Nobody likes collapsing in a pile of tears in the middle of a crowd. And if I could not sink into a depression, I would. Trust me, even through a depression, I'm trying to keep to react as best as possible. I'm trying not to let it drag me under into an abyss of nothingness. I don't always win. Please believe me, if I can't control it, I really can't.
Fellow mental health battlers, have more? I'm sure there are plenty. I try to laugh at them, to brush these things off. It helps keep me from isolating myself, feeling like nobody understands me. So I joke and use colorful language to make them lighter. But honestly, these things aren't funny. They're annoying at best, and ignorant and stigmatizing at worst. 



Saturday, December 3, 2016

Today, I Realized I Was Living in the Past

Today, an interesting thing happened. I realized I've been living in the recent past. To clarify, I don't mean specifically that I can't let go of my past or anything like that. Those actively in my past have moved forward, as have I. I'm happy for them. I don't burn bridges nor do I hold grudges.

What I mean, however, is that I have been looking at people and situations that I still consider part of my life, in some cases a big part of my life, as they used to be instead of as they currently are.  For instance, I have a friends that I used to see all the time.  I'm talking like at least once a week, for months or years.  But now, I haven't seen them in months or years.  I often don't even talk to them for months, not counting a Facebook comment here or there.  And yet, I'm still sitting here saying, "I can't believe s/he didn't donate to my Overnight Walk! I can't believe they didn't even acknowledge the email! We're such good friends, I've tried to help her/him so much over the years, donated to their causes, been there to do stuff with them... etc".   But then I sit back and realize I can't remember the last time that person reached out first, other than maybe a happy birthday a few months ago and the aforementioned Facebook or Instagram comment here or there (which I don't really count as reaching out unless it's really personalized).  I realize the last few times we talked (texted), we said "We *have* to get together soon! I miss you!" I realize that I said, "OK I'm free this day and that day and xyz.  Do you want to do this? Or how about that? Let me know." And they never did. They never reached back out, took the initiative, made the plans. And this has happened numerous times over the course or months or even years. It has been all me for a while now. And that's when it hit me:  we were good friends.  Maybe for quite some time. And maybe one day we will be again. But right now, we aren't. Yet I'm holding them to the standard of someone who is. Of someone they used to be, or maybe even who I thought they were. Of the relationship we used to have, not the one we have now. Not who they are to me, or more important, who I am to them, now. And that's not fair, to them or to myself, and I need to let it go.

This happens all the time. I've experienced in reverse. Because of my illness, my health has to take precedent. Which often means I can't be out late, or at all. It means I need my down time, my quiet time, my recoup time, and even when I'm out, I'd often rather do weekend brunch than a night out on the town (read: would always rather). So friends that I spent time with when I made an exception and went out for a couple of people's birthdays don't understand why I'm suddenly so boring, why I never want to go out. And I have to say, "listen, it was fun going out a few times" but I really can't do this constantly.  It's not really me. Or friends who always want to do things in big groups, who think the more the merrier, and I have to say, "listen, big groups give me an anxiety attack, I need one on one time, so I don't think I'll make it."  I'm may feel like rejection to them. To them, our dynamics have to change. They may feel I have changed.

So I sat back and thought further, and I realized that there are a good number situations in my life right now - in my business, in friendships, in personal situations - where I've been holding onto the past. I've been looking at my business as I did as a 26 year old just starting out (12 years ago). I've been looking at friendships I had when each of wanted different things or our life situations were different. I've been looking at personal situations that I thought of one way, based on impressions formed months or longer ago, and have never adjusted. Maybe I changed, maybe the situation changed, maybe someone else involved changed. Maybe my impression was wrong all together, just as the above friends though I liked nights out and big groups based on their initial impressions.  But the bottom line is, it's not the same anymore. And I need to let go of those former beliefs. I can't live in the past. In fact, I get frustrated (SO frustrated) at people who do - people who make the past more of a priority than the future, more of a priority than working with the present to create that future.  But I've been doing that, just in a different form. I've been holding on to who people were when I first met them, or when one or both of our situations were different, who I thought they were. I've been holding onto things that have morphed and changed over the months or years, and am still trying to hold those people or situations to the same standards, expect everything to be the same. And in doing so, I've been hurt. Badly at times.

So I can't do that any longer. I have to stop, take stock of the people and situations in my life, and decide how I'm going to move my life forward from here, with people and situations as they are now - not as they were then, whenever then was. That doesn't mean ditching friends, un-friending them, or whatever. It means realizing they don't play the role they once did, and not expecting them to. It means not holding them to the standards that I do for my current closest friends. I can't get mad at them for not donating or supporting something. I can be slightly disappointed and maybe even a little discouraged and hurt at times, but I can't be mad.  It's not fair to them and it just hurts me over and over. I need to move forward, controlling those things in my life that I can, focusing on those in the here and now - as they actually are, not as they used to be - and creating my future based on these. It sadly may mean that some people or situations I formerly focused on, held in certain positions of esteem in my life, are not looked at the same. But life is constantly changing, and maybe they'll get there again. Or maybe they've played their key role in my life and I in theirs when we both needed it, and now that fades a bit. And while this is sad, because it feels like a bit of a silent goodbye to what once was, it also is a bit freeing. For so long, I was holding in priority people and situations that were based on the past.  And now, I have been freed of that. Now, I can look to the future, basing it on the present and the opportunities it holds now. To those of you who played such an important role when I needed it, thank you. We may not be the same anymore, our dynamic may have shifted, but I wouldn't be the same without you having been a part of my life. 

Wednesday, November 30, 2016

It's The End of The Month As We Know It

It’s the last day of HAWMC! Congratulations, you completed 30 days of writing! Take this last post to reflect on your health advocacy journey and set a goal for the next year. Perhaps you want to try a new platform for your activism, attend a patient summit, or start a podcast. Remember, “Set your goals high, and don't stop till you get there.”

Guys, I did it! I completed HAWMC! I did skip 3 days, but those were intentional, as they felt like things I'd just recently written about, or that didn't particularly apply to me at the moment. Or, in the case of yesterday's, I've just not had a ton of chance to read others' post enough to pick one (sorry, that makes me a bad HA I know). But considering that this month held more work hours than normal, the Thanksgiving holiday, and stomach-virus-ageddon, I'm pretty proud of myself. 

My goals for next year? Well, I do want to attend a patient summit and/or conference for HAs. That's pretty high on my list. I also want to make sure to raise the necessary funds and complete my fourth Overnight Walk next June.  

My biggest goal, however, is a project that I've just recently begun promoting called the Spread Hope Project (link to initial Instagram post here). The project idea bloomed from a shirt I own that says the word "Hope" across the front, which I bought at an  event but have seen nowhere else on the organization's website or elsewhere. I loved the message of hope and thought, "How great would it be to get a picture with a shirt that says 'HOPE' in as many different locations and with as many different people as possible." Literally, spreading Hope to as many places and people as I can. I broadcasted this on social media, and people started volunteering themselves or their locations/cities/etc for pictures. A friend then suggested making my own "hope" type shirts (not the same, but with the same message) and donating the money to mental health and suicide prevention charities. This idea merged with a similar one that had already been brewing in my head, and the Spread Hope Project was born. I have more ideas, longer range goals down the road, but for now, I'm focusing on getting out there and getting pictures with people and places, and eventually developing Spread Hope shirts (not the same as the original, but with my own logo) so that others can Spread Hope as well.  (CYA: I know there are trademark/etc processes involved in creating my own design here and I'm on it). 

And so, my call to action is this: If you are interested in being in a Spread Hope picture, or think that your location would make a great backdrop, let me know! Additionally, if you are a business or organization, especially in the Philly/South Jersey area, and would like a picture in your location and a tag on social media, reach out! As the rest of the plan becomes more concrete, I'll undoubtedly be posting more on this. But for now, you can follow along on my personal Instagram and twitter, as well as with the hashtags #spreadhope #spreadhopeproject #spreadhopestopstigma and #spreadhopesavelives. Let's get those pictures rolling!


Monday, November 28, 2016

Challenges and Little Victories

HAWMC Day 28: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Challenges and small victories are what being an HA is all about. The challenges force me to look at my advocacy work, my condition, and myself in a new light, and the victories, well they're part of what gets me out of bed in the morning. So here we go. 

Challenges: 
  • The stigma.  This, to me, is both the biggest challenge, and one of the most important reasons I advocate. Over time, I've developed more of "deal with it or don't be around me" attitude towards the stigma, but it's still always there. Naturally, I care less about what people I don't know think of me, and I feel that my friends aren't real friends if they stigmatize me because of my illness. But it's those in positions of "power" that have caused concerns at times - those at work, in professional organizations (I've sat on several boards), clients, potential clients. I say "power" because if they decide to stigmatize, it could really cause a problem in my career. It's much more difficult to say "well I'm better off without them" if it's someone who can directly affect your livelihood. 
  • Offering insight into my cycles without completely confusing or concerning my reader. I often write best when I'm battling anxiety, depression, or hypomania. It helps me give a "first hand" account of what it's like, in the moment. But I also have to balance that with not writing when I'm all over the place, can't focus, can't think clearly, or when I'm so low that things I say could concern my reader. 
  • Not blogging/tweeting/posting every thought that ever comes into my head. Writing is my escape, especially in the midst of a tough mood cycle. It helps me get my thoughts out of my muddled head, which helps to ease the constant tug of war in my brain. But I have to force myself to pause and take some time before hitting publish. Because I try to understand that even if it seems urgent to me in this moment, that may not be the case, and it may do best to let it sit, re-read, revise as necessary. Especially when angry. 
  • The constant advice. I know many people have the best of intentions. But I'm battling a serious medical condition, and it can't be "fixed" by taking deep breaths, meditating, praying, focusing on the positive, etc. Can those things help? Possibly. (Though, I'll step out on the praying bit personally, as my status with religion is shaky at best). But they aren't going to cure me. Thinking positively isn't going to make my depression go away, just like it wouldn't make someone's cancer or heart disease go away.  Because trust me, if it could, I would have done these long ago. 
  • The topic of medication.  This is a bit tied to the above. People often think I can just will myself better. Let me tell you something: I cannot.  Period. Trust me, I've tried. I've tried everything I can that didn't involve medications. And I was no better. My medication is live saving.  Yet so often I have to battle the "You're a pawn of the pharma industry. Your Dr. isn't helping you they just want you to need them more" people. And maybe they've managed to help their condition without meds. I'm super happy for them, seriously. Because meds suck. But the don't suck more than they help. They are not me, and therefore they don't know what's best for me. These people anger me SO much. I don't do well with people who think they know my body and my brain better than me. The stigma of medication is a whole other animal from the stigma of the disorder itself. 
Little Victories:
  • Every person who comments, messages me, or contacts me in some other way to let me know that my efforts have helped them. 
  • My spoonie community. You guys are my life line at times. Literally. 
  • Completing the Overnight Walk three years and counting. These are some of the most amazing experiences of my life. Hearing people's stories, meeting others who have battled themselves or who have lost loved ones to suicide makes me fight that much harder to help those who need it. 
  • Getting nominated for a WEGO Health Activist Award. Thanks, guys! I didn't win, but hey, there's always other years. The nomination itself means so much. 
  • Opportunities to guest blog, host twitter chats, and share my experiences in other ways on other platforms than my own blog. Working together is key to me, and the opportunity to do so with fellow HAs is awesome! 

Tuesday, November 22, 2016

Hey, Healthcare Industry!

HAWMC DAy 25:  As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?

Just one? Pretty please, can I pick at least... oh... 10? Or at least 3?

If I had to pick just one thing, it would be the lack of patient input. Not the most technical term, I know, but I'm battling flareups of both CFS and IBS, as well as a depression cycle this morning, and I'm lacking for one right now.  But more or less, patients needs and wishes - from the patients themselves, not assumed by or guessed at by bigger companies, organizations, etc - should be sought and incorporated more. Period. If they are not, how can you truly have the patients' best interests at heart? And after all, the healthcare industry should be about just that - patients and their health.

The thing is, unless you've experienced an illness, you can't 100 percent understand the needs of each of those illnesses? Unless you've battled chronic illness, day in and day out, over weeks, months, years, how do you know what would best benefit those who do? Not to mention that needs aren't the same across the board. What someone with depression requires probably isn't the same as what someone with a heart condition or an autoimmune disease requires. Without input from patients battling wide range of illness, it's virtually impossible to make sure that each of their needs are met.

How can this be accomplished? I'm not sure. But it's crucial for those of us for whom monthly, or even weekly, or sometimes daily doctors visits and healthcare visits and treatments are a reality. When it comes to the chronic illness, I consider myself lucky to only have to see my healthcare professional every few weeks, to only need blood work every six weeks, to have found a therapist (my main treating healthcare professional) who I trust, even if she can't take insurance. But I still don't have the access I should. I shouldn't have to pay $6000 out of pocket before insurance kicks in. I shouldn't have to pay ridiculous amounts for necessary blood work, to ensure that my life-saving medications aren't damaging my organs. I still shouldn't have to choose a bottom of the barrel insurance plan for over $400 a month because it's all I can afford - though trust me, I'm glad I at least have to be guaranteed insurance (for the time being at least). I shouldn't have to accept what I can get when it comes to my health, my life. But I do, like so many others. Because we don't get input, not enough at least, into our healthcare system. We just have to be the recipients of what everyone else decides. 

Pictures Worth 1000 Words

HAWMC Day 24:  Choose 3 images that represent your health focus.  Share the images in a post and explain why you chose each of them.

Each of these beads represent one of the reasons I walk the Overnight Walk every year. 
Blue:  Support suicide prevention
Teal:  Friend or relative who struggles or has attempted
Purple:  Lost friend or relative to suicide
Green: Personal struggle or attempt


Each of these people has been in some way affected by mental health and suicide. Each of them are impact enough to walk 16 to 18 miles, overnight, for the cause.



Each one of these luminaries represents someone who has died by suicide. 

This is why I do what I do. Each and every one of these people and their loved who struggle or have lost their lives to suicide are why I advocate, and will continue to do so. 

Say What?

HAWMC Day 23:  Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

Honestly, most of what people say about my condition is ridiculous. At least those who don't understand it. But I think the most ridiculous thing I routinely hear about mood cycling is when people thing we go Jeckyll and Hyde mid-sentence. When they say things like, "She was being all nice and then just flipped. It's like she's bipolar."  Yes, I'm rapid cycling. But I can at least finish a conversation before I cycle. I cycle in a matter of hours or days, not seconds.

This type of thinking perpetuate stigma. It makes people view us as volatile, unpredictable. So when the media tries to pinpoint as dangerous, people nod and say "yes, I can see that," despite statistics quite to the opposite. This perpetuates the cycle, and round and round we go. Not one person stopping to actually learn about the disorder and how it manifests itself.

What did I think about it when I heard it vs now? The same. I still think it's ridiculous to think someone could literally just cycles mid conversation, without any "warning", for lack of a better term. And I still think it's just as stigmatizing, ignorant and closed-minded to think this way. Here's a tip: if someone switches on you like this, I'm willing to be everything I own that they aren't cycling in that very moment. Perhaps they're having a bad day. Or perhaps you're just being a jerk and they've finally reached their boiling point. Because sometimes it's not us, it's you.