Category: mental health

The Raven

Posted on by Grayson
It’s no secret that T and I are complete nerds. We’re proud of it. Currently, we’re rewatching Star Trek: Voyager. There is a lot I can say about the show, from the sassiness of Captain Janeway to the complexities of being lost in a quadrant of space humans have never seen to the process of helping a former Borg ‘assimilate’ to her human body.
We’re currently watching season four, the season where Seven of Nine appears and we learn more about her backstory.

 

H/T Memory Alpha
As we started watching the episode, Seven begins to have these visions where she sees other Borg coming towards her. Instead of embracing or simply being indifferent, she feels intense fear. Right then, I had my suspicions on what this episode would entail.
Upon heading to sickbay, The Doctor examines her and finds elevated levels of various chemicals in the brain. My suspicions are confirmed and The Doctor informs Captain Janeway and Seven that this is reminiscent of Post-Traumatic Stress Disorder.
Side note: flashbacks suck, but I’m glad mine don’t include creepy animals like ravens.

 

H/T Memory Alpha

As these flashbacks continue, Seven begins to act out. Eventually, her Borg hardware starts trying to take over again upon hearing a homing beacon. That homing beacon eventually takes her to the planet that her family’s ship crashed on – The Raven.

During this time period, she has gone through the main stages of PTSD very quickly – flashbacks, hypervigilance/hyperarousal, and being numb like threatening to assimilate others.

H/T Memory Alpha

Quite honestly, this is how it really happens.

Sometimes we get to that realization that we are safe but can’t shut down the memories. Other times, it takes something big to knock us out of the cycle. For Seven, being on the ship did that:

It happened here. This is where it began. This is where I was assimilated. This was our ship. We lived here. We lived here for a long time. My father did experiments. They were very important and we had to travel a long way. I had my birthday here. My cake had six candles on it and… and one more to grow on. And then the men came. Papa tried to fight them, but they were too strong. I tried to hide. Maybe they wouldn’t find me because I was little. But they did. And then Papa said we were going to crash and the big man picked me up and then suddenly, we weren’t on this ship anymore. We were somewhere else. And then I became Borg.

Seven talks often about how difficult it is to interact with other humans. She feels isolated, alone. She doesn’t know how to behave or how to do simple things like eat.

H/T Memory Alpha

It’s not unlike how I’ve felt – having to have my husband show me how to brush my teeth or carry out other simple tasks. There is a shame in that which can keep people from pursuing that learning.

At the end of the episode, Seven escapes. She starts learning more about her humanity, trying to learn about creativity – something Janeway was discussing with her at the beginning of the episode. She says that she will eventually learn more about her parents from the ship’s computer, but isn’t ready yet.

In her own way, Seven’s immediate battle mirrors what many of us living with PTSD go through. At the beginning, we don’t often fully comprehend our flashbacks. They are incomplete or, like Seven’s, not entirely accurate. We don’t understand what is going on with our body and mind.

We don’t get what we’re feeling.

Like Seven, it takes someone telling us that we’re okay. In the immediate situation, Tuvok was able to help bring her out of the attack and work on getting to physical – and emotional – safety. Once back on the ship, The Doctor, Janeway, and others work with Seven to help her grow, to feel safe.

H/T Giphy

I never thought that I could identify with one of the Borg, but damn. There is some irony in the fact that I’ve said T is similar to Tuvok in the past as well.

I’m not sure there’s a point to this post, except to point out how expertly PTSD has been shown in Star Trek: Voyager.

Other pieces on the subject or this episode:
Seven Of Nine: Posterchild For Childhood Abuse & Recovery?
The Raven (Memory Alpha)

Therapeutic Thursday: Swimming Class

Posted on by Grayson

This month I took my first-ever swimming class.

I was so anxious before the first class on the 9th. I couldn’t sleep the night before though that’s been the norm lately too so maybe it’s unrelated.

I had panic attacks upon panic attacks in the days beforehand.

I should have learned to swim as a child. My uncle tried to teach me for a while when I was maybe eight? Life got in the way. Had I been in real school versus being “homeschooled” I would have learned; had I lived in a non-abusive home I would have learned.

The class itself went great! I did better than I thought I would. But it brought up so many emotions, so much resentment. I am so disappointed with choices that were made (or not) for me as a child.

I’ve had to teach myself medical terminology in a rapid amount of time. I’ve had to learn how to navigate insurance quickly. I’ve even had to deal with LITERALLY rebuilding parts of me that should never have deteriorated in the first place.

I tackled riding a bike on my honeymoon.

Swimming has been the last big issue, the final sticking point regarding my maltreatment in my childhood. I’ve worked on everything else, just a bit, already.

This is the final way to throw the motherly shackles off, to kill the fear monster she created, and to take back my life fully.

I could never do it without T and my sister, never.

 

Mental Health and Arthritis #WorldSuicidePreventionDay

Posted on by Grayson
Today is World Suicide Prevention Day. On Sunday I’ll be participating in an Out of the Darkness Walk with the American Foundation for Suicide Prevention in honor of those with autoimmune arthritis and autoinflammatory diseases that we’ve lost in recent years to depression and mental illnesses.

 

One of the biggest reasons I have this tattoo on my wrist is to remind me to believe in many things – that remission is possible, that I’m worth the effort of self-care and self-love, that I’m enough… and that this pain we go through is worth it.

When things are their worst, it isn’t always possible to remember that.

Recently RA Guy and the great people over at Joint Decisions put on a webinar about mental health and arthritis. Several things stuck with me, especially the fact that you’re twice as likely to have depression when you have RA as someone who is normal.

The stages of grief – denial, anger, bargaining, depression, acceptance – are things that those with chronic illness tend to experience in a cyclical rather than linear manner. Maybe today I’m angry about being sick and tomorrow I’m fine with it and the next day I bargain with an unseen Arthur to knock it off.

RA Guy talked about things that he’s found helpful like humor, breaking down tasks, asking for help and being open to accepting it, positive or motivational thinking, etc. The biggest thing that he touched on that really resonated with me was to allow yourself to process and feel. I think we often try to ignore the sadness or other emotions (like in Inside Out) to be happy all the time.

When the shit hits the fan, we really need to work on savoring the good we experience, connecting with resources, practicing self-compassion/love/care, and, perhaps most importantly, advocating for ourselves. It’s easy to let others make decisions, especially about your care, if you’re depressed or dealing with some tough subjects. Just don’t forget to add in your voice and speak up for what you want. It can help you feel better about yourself.

Another thing that was good to be reminded of is how important our emotional and mental health is. These things are just as important as physical health, so please remember to take time and address issues you have in all areas.

A few times, RA Guy and the doctors on the webinar remembered to hammer home the idea that you have to feel comfortable bringing up these issues with your doctor. If you don’t, you have to figure out how to get to that point, even if it means changing your health care team members. You have to be able to be open with all your providers and make sure they know about your health issues, physical or mental.

Other tips from this webinar were to be adaptable, write or blog, practice mindfulness, remember you can’t change others, get realistic with your daily goals, and to become educated about your disease.

These changes won’t make things perfect. Life still might suck a lot. But a change in how you handle yourself, no matter how small, can really help and have an effect on many other parts of your life. As RA Guy said, “I’m prepared to deal with how I’ll feel tomorrow.” Maybe that’ll mean you feel like crap physically or mentally – but if that happens, you can open up your toolbox full of tips.

On a more personal note, I want to share a story about my struggle with mental health issues.

Depression isn’t the same as being sad, but is more the absence of happiness and enjoyment. It’s when things that you love and enjoy and are passionate about no longer bring you joy. You think irrationally, only realizing it if you have to explain things to someone else.

Three years ago I was *finally* diagnosed with fibromyalgia, though I’d likely been dealing with it for most of my life. I had recently started seeing a therapist after having to call a hotline because I was on the brink of self-harm or worse. I was missing more and more work as a result of my pain and was on the brink of losing my job and, this combined with continued emotional abuse from my mother, other illness issues, and having to stop graduate school… I became very depressed, both from the pain and the feeling of not being in control of my life and my destiny. More than once, I thought about crashing T’s car into a pole or something. If I didn’t die, I’d wind up in the hospital and at least get some relief from pain medications. I look back on that time now and wish that I had spoken up or made changes sooner.

For the first time in a long time, my pain from my SJIA and my fibro are both, mostly, under control. It took me three years, trial and error with different medications, and making major changes in my life to get to now – literally.

If you know someone who struggles with depression know that, while you can’t directly help their illness, you can be supportive of that amazing person. One of the things that has helped me the most is knowing that T and I have similar struggles with our mental health. Because of that, he and I are very good at helping each other, which can be as simple as snuggling or as involved as calling the other’s therapist to warn them when things aren’t going well.

Regardless of whatever else you do today, give someone a hug. Tell someone you care about them or love them. Ask how they’re doing, not as a formality but because you really want to know the answer.

You know where else you can find more talk on mental health with chronic illness? At MedX! I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

 

Therapeutic Thursday: I am mentally ill, and that’s okay

Posted on by Grayson
It’s one thing to discuss the limitations of a mental illness and another to stand up and say that I am mentally ill. Mental illness has so much stigma associated with it. It’s easy to pretend we’re okay when we interact with others because they can’t see – just like with physical invisible illnesses.
A couple of times now I’ve engaged in conversations on social media about remembering to be inclusive of those with mental illnesses when we’re discussing or designing things for physical illnesses. Each time I’ve gotten hit with personal crap that didn’t need to be dragged into the situation – and this is from other chronically ill activist types.
Each time I’ve gotten comments about how, essentially, I need to get over what happened, see the great things that I’m doing, and move on to a more optimistic mindset.
I need to point out quickly that none of these things would be said if I was a veteran or had been through a major publicized tragedy. But nah, just grew up being beaten, belittled, and mind-fucked, so no biggie here.
Sigh.

Those of you who know me in real life know that I’m actually annoyingly sweet and optimistic when my mental illnesses aren’t getting in the way. I have to stop myself from running when I have a good day in the middle of a flare because surely I’m fixed now! I have to calm myself down when seeing movies because I get so excited that I bounce up and down like a small child.

I am SO much the heart from the heart and brain comics that it isn’t even funny.

And yet these people who are supposed to be about helping each other attack others who aren’t into optimism or positivity 24/7. It’s so nauseating and I don’t understand why this continues to happen. Suggesting that people remember to be inclusive or stop using ableist language isn’t an attack – and it doesn’t warrant responses that feel like personal attacks. That’s already something that I sadly get in the chronic illness community because I refuse to be inspiration porn or happy all the time dealing with my physical illnesses.

I’ve also had it pointed out to me that I still accomplish cool or big things, as if those things wouldn’t be able to be done with mental illnesses and I must not have it as bad or not be ill. If any of you who are thinking that are reading this, know that some of the best artists and scientists in all of history lived with these illnesses. That does not make them any less ill.

In our big community, people attack each other for a lot of things – positivity, inspiration porn, physical activity level, not being disabled enough, etc. People jump to each others’ aid when this happens, and yet do nothing when the conversation is about mental illness. I guess it would change things if that was something that happened, but it isn’t. Nonetheless when these things happen, it really makes me question why in the world I’m involved with this shit. Honestly.

It makes me question every single thing that I’ve done since 2007 to become more involved in the illness community. It makes me question going back to school, being involved in these orgs and groups, and even blogging. Sometimes this even comes from people who I’ve helped a good amount and it makes me question my decision making skills.

I’m sure some will respond that I shouldn’t let people get to me, that I’m the only person who can make myself feel inferior, and other bullshit.

I have mental illnesses. These don’t make me any less of a person but, unfortunately, they affect the way I interact with others. My brain is wired – literally wired – differently than someone who hasn’t dealt with depression or anxiety or PTSD. On scans, my brain looks different than yours because of the abuse I’ve lived through. I cannot change that any more than I can change my eye color – I can cover it up with contacts and not tell anyone, the truth but it’s still there.

Even as this post goes up, I’m getting ready to spend time with other juvenile arthritis peeps at the JA conference. I’m nervous about who I will interact with and how I will portray myself. I’m worried that I will have an anxiety or panic attack and everyone will know. I’m worried about saying the wrong thing and making it obvious I have shit social skills. I’m worried the abuse that I’ve lived with every single day will pop up and make it hard to do what I’m there to do – interact with others.

I worry about this more than anything – more than lines at theme parks or applying enough sunscreen or hurricanes or delays in our flights or flaring up from going or the humidity down in Orlando.

I worry about this so much that I can barely sleep. The sleep I do get isn’t restful. My body is on edge constantly, which makes my physical illnesses angrier. I worry about it so much I don’t speak so much to my husband as I do to our piggies because I know I’ll bring this all up and I don’t want to talk about it.

It affects work. It affects home. It affects my doctor and therapy appointments. It affects the very little social life I do have. It affects my other illnesses. It affects my self-esteem. It affects how I parent my guinea pigs or relate to my husband or talk to others in my family.

If you want to learn more about mental illness, ask kind questions of others. Don’t attack them or turn conversations about general topics into specific things about that person. If you want to be helpful, use kind and calm words. We all jump to someone’s aid when there is a misconception about their physical illness – why do we jump to the attack instead when it’s about mental illness?

Next time you feel like questioning someone’s illness, please remember how shitty it feels when you’re on the receiving end.

PTSD: what it is, what it feels like, and why I hate it

Posted on by Grayson

PTSD (Post-Traumatic Stress Disorder) is something that I’ve been struggling with. It’s something that I try to be pretty open about on here because I know it helps myself process things but it also helps to raise awareness and help others feel as though they’re not so alone.

It’s common in our veterans but also occurs in a wide variety of people depending on their experiences. My comrades in being afraid all the time can include child soldiers, kidnap or assault victims, terrorism, bullying, those who witness death and natural disasters, or other traumatic and stress causing events. It’s actually a lot more common than people think. There is also a genetic component though it needs to be investigated more.

My brain even looks worse hooray!

In very very basic terms, PTSD is essentially where your mind and body are in constant fight-or-flight mode. Sometimes it’s just lurking and subdued, but can be triggered by a number of things. To expand, the trauma affect the levels and productions of certain chemicals in your brain like cortisol, adrenaline/epinephrine, norepinephrine, and dopamine. It can affect your prefrontal cortex and other areas in the brain as well as chemicals that regulate your temperature, growth, and metabolism… and your amygdala, which helps regulate emotions and learning and your memories.

Basically it just messes with your entire body. NBD.

There are a lot of things that happen as a result of this body-wide issue. I used to be very short with everyone and get overly angry at little things. I’m happy to say that I’m over that for the most part, because I’ve learned to communicate what I’m dealing with and express myself.

If you live with other chronic illnesses, you may notice that some of these are things we deal with due to rheumatic disease or other things – difficulty sleeping, irritability, difficulty concentrating, memory issues, etc. I feel like I’ve gone to Culvers and gotten a delicious meal to find it tripled in my bag.

But like with things I don’t like in it instead of delicious custardy goodness.

Anhedonia is when you stop getting pleasure or joy out of things you normally love. That one sucks. I would say for me that it’s the same as feeling flat but eh. There are have been days where I come home and the piggies are so excited to see me and I’m just kinda like…

That breaks my heart because I love them like they were human babies… which can lead into questioning myself on what the fuck is wrong with me and how I thought I could be a parent to animals let alone kids in the future being so fucked up, etc, etc.

That, hypervigilence, flashbacks, and intrusive thoughts are definitely my least favorite.

Hypervigilence is just exhausting honestly. Do you ever have the feeling that something bad is about to happen (like the dude walking behind you creeped you out) so you’re extra aware of your surroundings? Or where you might hold your keys in your hands in a way to fight back just in case you’re mugged or whatever?

That feeling has its place, which is exactly in those situations. It doesn’t need to be in your every day life. It’s exhausting, harms your muscles because they’re often tense, and mentally is hard to process unless you go into the CIA or something.

Sadly, I did not.

Sometimes I like my spy skills but not usually.

Flashbacks are just hard. For me they tend to involve moments where I didn’t protect my sister and instead watched her being beaten. That happens so much so actually that it’s almost refreshing when my flashbacks are of myself being beaten or assaulted or molested.

 

This image takes you through some of the steps that can happen over the course of a single PTSD episode but also of the initial trauma. If we think of it as a guide for being triggered, we can use one of my issues to walk through it (why do I share some of these things?). In case it needs to be said, from now to the next picture is going to contain major triggering talk for child physical abuse.

Right now I’m not able to watch Law & Order SVU which sucks so much because it’s my favorite. Katy and I used to watch it practically whenever we weren’t in class in college, so it also may be part of why some of my energy drink fueled papers sucked.

This is going to be a fictional trigger with a real result, but it’ll help shed some light on these attacks.

I’m watching an SVU episode and it turns out the child’s mother was helping her boyfriend to sexually assault her daughter. I usually can figure these types of twists out easily, but sometimes I miss them and they take me by surprise. When that happens, it’s almost like I can feel myself shutting down or I have to go do everything on my list ever NOW to get away.

I’ll explain.

When I’m initially triggered, I get the chemical fight-or-flight reaction. It makes my hair stand on end and I get a shiver in my back or neck. I may breathe differently – more rapidly and audibly, like I may cry or hyperventilate. My temperature changes. I zone out if I don’t go do other things because that’s a technique that kept me sane and from fighting/talking back. I’ll interact with you intelligently but may not remember our conversation. It feels like everything is still and taking forever because I feel slowed down.

Sometimes this is where it ends. Eventually I watch something funny or go do something and wake up out of this.

Other times I’m not so lucky. Maybe the SVU episode showed some of the interaction or showed a parent beating and degrading a child. I go through the process above, but with some add-ons.

It takes me back to sitting in one of the two rooms that was once part of the garage in the house I grew up in. They turned part of the garage into two rooms before we moved in – one with blue carpeting that was sometimes a kitchenette or pet room depending on the era, and the other with red carpet which was either a bedroom or a movie/hangout room. In the memory I bring up, the blue room was a kitchenette with storage and the red room was a bedroom.

There was one of those white wire shoe rack type things on the back of the door to the red room (which you got to through the blue room) where mom hung her belts in addition to shoes I think. All that ever stands out in my mind are the belts.

My sister is crying and screaming and begging as my mother drags her into the red room and closes the door and locks it. I’ve run after them wanting to know what happens, telling my sick six year old self that I can help my sissy. I know I can pick the lock but I don’t want to leave because what will happen to sissy. I’m presumed that me being near will help things not go too far. I’m scared as hell.

The wire rack hits the door as mom yanks her belt down. You can hear the clinking of the belt buckle, a noise that to this day elicits this memory. If my pants are falling down, please just keep it to yourself because fuck belts man. Fuck belts.

Whatever happened made mom angrier than normal. Normally, Kelsey just got hit with the inserty end of the leather belt. This time she isn’t so lucky. You can hear her still struggling as Michelle tries to get her into a position to whip. Maybe that’s part of why she got so angry? I have no idea. All the while Michelle is hurling horrid horrid insults at my baby sisser. They’re so bad I can’t access them. I know I remember but my brain won’t let me go there.

I move to hiding in a further corner and by this point I’m crying. Things haven’t even fully started yet.

But then they do.

And all I can hear is the snap of the belt, the violent clinking of the buckle, as it hits Kelsey’s skin… and her blood curdling scream. Every lash makes me cry out and by the time it’s almost over I could fill in for Niagara Falls. My throat hurts from holding in as much as I have.

It’s done and mom throws down the belt, which she’ll later ask me to pick up and put away before demanding that I cuddle with her. Touching this weapon and being so close to the woman who just did this makes me want to vomit. For now, Kelsey sits there crying and Michelle yells at her for it before leaving the room. She uses the old parent line about how this hurt her more than it did the child who was just beaten. She walks back to the main part of the house, not seeing me hiding in the corner thank god.

Kelsey has welts and bruises that quickly develop on her back. They really hurt her.

I feel like shit. I didn’t do anything to stand up for her or to wake my mother up to what she was really doing. I didn’t get help from other adults, though we were threatened with the knowledge that we’d be taken away and likely split up because who wants two broken girls. I feel like shit for still not really sharing details of this with anyone (this is the first time even T has heard this story in detail here). I feel awful for treating my sisser so poorly and for not protecting her. That’s what big sisters are supposed to do and I have failed.

I parented my mother enough at times that I feel guilty for not chastising her… until I remember that I was a six year old who everyone thought was literally dying. What could I do?

I feel helpless, hopeless, like shit. I’m worthless because I don’t do anything to stop this. I get angry with my mother, with her parents and grandparents. What did they do to raise this monster that bore me? My grandmother is much the same and has done similar things to my sister. She is, in fact, the one person I’ve ever called 911 on… Well, dialed 91 and threatened to finish.

It was much easier to stand up to her because (remember I’m in my six year old brain here) she is fat and can’t move as fast as mom. She also doesn’t sleep in the same bed with us or do nurturing things that mother does. Mother made me think that she was doing this because Kelsey was bad. Everything turned into her fault somehow.

My sister was treated like shit her entire life. My mother never cared to connect with sis – until I left and lessened contact. Then sis suddenly became this amazing child who could do no wrong, save not sending her poor mother money.

Sometimes this storm of thoughts builds and builds and I think about other events that happened or mistakes that I made. I spiral downwards until I’m numb and seem like a zombie. This happened everywhere – at work, school, lying in bed at 3am not sleeping, even during sex.

If I think about this, I get angry. Fuck you Michelle. Fuck you for all of this. It doesn’t matter how you were raised – you had a responsibility to do better by us, to love us and protect us, and instead you beat us physically and emotionally and allowed us to be sexually abused without doing shit about any of it. How fucking dare you?! And even more, you gaslight us. You try to act like what we remember didn’t happen. Then why the FUCK do we have the same or very similar memories? Why won’t you ever admit fault? That you did even one thing – maybe this particular thing?

Because of my research, my adult brain knows why. It’s because Michelle and Patricia are mentally ill. They need serious help that neither of them will ever get for many reasons, but namely the illness itself. Well, and not believing that they need it.

This all goes through my head in the span of a few seconds. While I’m zoned out, I notice everything. Hooray for special spy skills.

Now I’m just exhausted – physically, emotionally, mentally. I cry, sometimes in front of T or in the bathroom or at my desk at work or driving. My crumpled and angry body is done, spent, completely out of spoons in such a way that that phrase doesn’t do it justice.

It’s interesting to look at this image because so much of it has to do with ableism too, doesn’t it? Dismissing others as unimportant or unworthy? It’s like a family hobby. It gets so bad you think that you really are lying, like that episode of Star Trek.

The hardest thing about PTSD is that it’s a physiological response to an event or a series of events. When those events aren’t around anymore, though, your brain and body don’t know how to adjust. It still is prepared to protect itself. I’m grateful for the thought behind it, but living with the result is really hard.

Working on recovery is hard. It means revisiting a lot of this and allowing myself to feel the emotions and really be there with them. It sucks so many donkey balls.

I think the hardest thing is that sometimes the most innocent things trigger me. Sure, SVU is a perfect example, but sometimes it’s blinking a certain way or hearing a child scream (even happily) or a word or just someone being angry or berating/putting down someone else – even if they think it’s funny.

Of course, there is also the belt sound triggers. I hate public restrooms between this and being beaten during potty training.

I hate having a good memory honestly.

The good thing is that my antidepressant really helps. My therapist and I are working on some coping skills – and really working hard to get to the bottom of some things. I know that if I want to be more normal or have certain hobbies back, I have to get through some of this trauma. It’s not going to be easy and there will be days where I want to stop. I just have to tell myself that I’m different and will always be so, which is totes fine.

But you know what? I’m also unbreakable.

Freakout Friday: the problem with hope

Posted on by Grayson

I’ve had a couple of friends get picked on lately for this same view and I just don’t get it.

As I mentioned before, hope is a four-letter word for me (the bad kind, duh).

I want to elaborate on this, because it just keeps happening. First let me be clear – if hope works for you, awesome! I’m so happy for you and excited that you’ve found something that works well.

A lot of us, especially those who struggle with mental illness as well, can’t hold onto hope that same way. So the view that hope is eternal and crosses boundaries to help everyone is bullshit.

Sorry, but it is.

Hope is inactive. It leaves things up to others, whether that’s gods (prayers) or helpers. When we hope for a cure, we wish, but don’t act. Hope is wishy-washy. Hope is a go-to if we’re just trying to be polite, not genuine. Hope is passive, requiring no work and no acknowledgement of the dedication and tears and sweat that go into things. There is no timeline, no plan, no certainty that the task will ever be accomplished.

Belief, instead, is active. If I believe in something, I will throw my support behind it. I will do what I can to help that task get accomplished. It isn’t always focused on the positive. It’s an affirmation, a strength. With belief comes a degree of certainty. You may be wrong, but you believe in something.

Hope is impossible to maintain at all times.

Let’s be real here.

When I have been in so much pain I can’t see straight, hope doesn’t keep me going. Hoping that I feel better tomorrow doesn’t cut it when you’re dealing with certain pains and a lifelong, incurable disease. You know what does? The belief that the loved ones in my life need me and want me here does – that playing with my guinea pigs makes a difference in how they feel or helping my sister with her kids and her journey to healing from our horrible childhood or my niece tickled pink when she sees me on Skype or spending time with my close friends and us supporting each other or my husband holding me, telling me things WILL get better, or even just that he loves me.

Those things get me through, not a distant idea of hope or blind faith. Real concrete things that are in the here and now.

I believe a cure will come. I believe I will get better, and that belief is somewhat manifesting itself right now. I believe that I am different – I respond to meds or emotions or experiences differently than every person on this planet. I believe I am unique, as we all are.

None of those require ‘hope’ – let alone hope all the time.

When I was living with my mother and would get incredibly sick, I had to put on a happy face for others. I had to look my best or look like death – no in-between. I had to carry-on in the face of crap instead of taking time for myself.

Hope requires a similar covering-up of emotions, and I refuse to do that to make anyone comfortable, even myself.

Only choosing hope and not showing the negative, which isn’t necessarily what this is about but hear me out… It’s bad for those of us with invisible illnesses. We dress well and look happy to hide our illnesses like a prey animal, only to get upset when others don’t realize we’re sick.

Should they stop accusing others and deal with the fact that invisible illnesses exist? Duh. But we also need to stop always trying to cover up how we’re doing.

Happy smiling faces won’t raise awareness or get us funds for a cure.

Only talking about the real things we go through will do that.

Telling people to always choose hope is also ableist. I touched on that a bit at the beginning of the post, but let’s explore that connection between that and classism…

Did you know that 20% of adults in the United States have some type of mental illness? Many of those have multiple mental illnesses like yours truly. Those with physical chronic illnesses are more prone to mental illness due to the difficulties of dealing with their bodies. I think it can be assumed the rate is at the very least close to 50%.

There are also studies out there that certain illnesses like fibromyalgia tend to occur not only in conjunction with other diseases but also in higher rates in people who have experienced abuse, major accidents, or other traumatic experiences.

One group that I’ve seen tend to have all of these issues is adult survivors of child abuse. It’s been proven that child abuse rates tend to drop as income in the family rises. Abuse rates are highest when living with a mother who is either single or living with a man other than the father (in Britain at least, but I’d argue in the US as well). As we see in the links above, there is a strong correlation between childhood abuse and fibromyalgia rates (as an example).

If we, then, compare the ideas of those in low income, single parent/breadwinner situations being high homes for abuse and the rate of fibromyalgia in abused children, we could decide that lower income people tend to develop chronic illnesses more often (and that’s not just my idea or just fibro).

As someone dealing with PTSD from my childhood, which no doubt is also the cause of my depression and anxiety (and the eating issues I’ve had in the past), I’ll gladly share about my childhood.

My mother starting really dating when I was 13. She dated a few guys, only three that really spent much time with us. One is her current husband, another is the man who assaulted me, and the third was a jerk I think she saw to get back at the second honestly.

I came home several times from school to eviction notices on our door. We ate crap every single day because people were too lazy to cook. If we did eat at home, it most often happened because someone was coming over and we wanted to look good for them – or because sis & I decided we didn’t want to eat the crap and would make food.

There were times we didn’t have enough to eat. We used powdered milk. I ate sandwiches that were nothing more than ketchup and mustard because we didn’t have enough money to have much meat let alone other sandwich fixins.

A kid dealing with malnutrition, living in poverty with an unstable home life (as I’ve discussed my mother & grandmother’s epic fights before, I’ll refrain for now) and witnessing abuse/being abused is ripe for chronic illnesses.

That doesn’t mean that if you’ve lived a healthy and happy life that you won’t get sick.

Here’s my point from all this.

I’ve lived in poverty and dealt with abuse, which leaves me with my mental illnesses – mental illnesses that make it near impossible to always look on the bright side. My PTSD keeps me on guard, always worried about my safety or the safety of those around me. I’m hypervigilant, which means I see things in a room or situation that people who have lived without abuse don’t necessarily see. This is all stuff that served to protect me in the worst situations. The problem with PTSD is that your brain doesn’t shut those defenses down once you’re out and safe. I don’t need the force once the empire has been defeated.

My mental illnesses make it hard to use hope. Neither that nor the fact that I have them are shameful. Those I see trying to push hope or always being positive haven’t been through some of the hard things that my friends and I have been through. There are no hard feelings there, unless you’re someone constantly pushing hope.

It’s ableist against those of us with certain mental illnesses. It’s classist against those of us who grew up in hard situations like poverty. And it’s inconsiderate of others to demand this one size fits all way of dealing with illness.

Every person is different. It’s true with meds and it’s true with how we process our illnesses and feelings. I won’t judge you for the way you deal with things if you stop judging others like myself who can’t process that way, if you stop requiring everyone follow your ideas.

 

Therapeutic Thursdays: PTSD & me

Posted on by Grayson

On Tuesday, my therapist and I decided to step up my appointments from every other week to every week because I have a new diagnosis: Post-Traumatic Stress Disorder (PTSD).

The biggest factor is of course the home in which I was raised. I witnessed, was exposed to, and endured some very difficult things. Some of the things I shared with the therapist this week were things that no one has details on. It felt good to get those things out, for someone else to share that burden.

For most people, finding out they have a mental illness that affects 1 in 3 troops returning from the field might be too much. I mean, how can my childhood compare to war?

It’s true that PTSD doesn’t just affect those who’ve been in war or similar combat, and I know that, but still. I downplay so much of what I’m dealing with in my every day life. I use this blog and my social media to express myself in ways I’ve found very hard to do so in person. Part of that is my mental illness issues and part of that has to do with boundaries and lack of social interactions during key ages.

In reading more about PTSD, a lot of things in my life started to make more sense – my hypervigilance, trust issues, sleep issues, detachment, random flashbacks… Even the issues I’ve had with anger, expressing anger, and dealing with confrontation.

It’s not necessarily that I don’t want to remember these events, but there is a time and a place for working through them. My body waking me up at 3AM because I’ve had a flashback in a dream isn’t it. Other not-its? Driving, intimate moments with my husband, watching a movie, cooking, in line at the grocery store, in a big meeting for my job, etc.

I’m grateful for this label. I’m grateful that this is legitimate. I’m grateful that the impact of all these events has not been in my head. I’m grateful that my feelings are being validated, even though that isn’t absolutely needed… I know that, at times, I’ve needed that reassurance. I’m so used to gaslighting that I question myself on too many things.

Most of all, I’m grateful that myself and my loved ones are safe, that we’re not in the position we used to be.

Right now, I’m ready to face what I’ve gone through. There will be times when I want to quit and times where I need to go more slowly. I know that nothing ever changes overnight and that anything worth doing isn’t easy. The most important thing is that I know that it’s worth it – that my relationships, my career, my family, my very own self are all worth the fight.

Mental Health Ableism: what our support groups are getting wrong

Posted on by Grayson
I need to rant a little bit about the ableism present against mental illnesses… mostly because holding in my frustrations about it worsens my own mental health issues, but also because it’s not talked about.
First, some stats…

In January, I was poking around in EPIC’s MyChart, an EMR system, to try to find information on both my MRI results (because waiting a week was nerve wracking) and what exactly my former rheumatologist was treating me for… Turns out NOT SJIA, but polyarticular JIA. Frustrations abound.

But I digress.

I found an after visit summary from my therapist I was seeing a few years ago starting before Laura passed away. He was helpful in dealing with the grief from her loss as well as the issues I had with my family situation, but wasn’t necessarily as helpful for other issues. I knew that I had been dealing with depression and anxiety, but he put down two diagnoses that I hadn’t seen for those – Generalized Anxiety Disorder (GAD) and moderate depression.

It would’ve been nice to know what was going on with me the last couple of years before last month!

I had a lot of life changes in the last year, so dealing with both was very difficult for me. Wanting everything with the wedding, with my family issues, etc, to go right brought about a lot of anxiety. I’m go grateful for how wonderful that day turned out to be. I’m just floored at how much laughter, fun, and love there was.

I met my dad and his family, which was awesome but a little scary. I’ll admit that. There are no words to describe it. My sister moved out to California and then discovered she was pregnant again. T and I moved and I changed jobs as well as having worse health issues. We adopted three adorable guinea piggies. T’s therapist retired, who has been a huge help to us both. He’s known T a few months longer than I have, and so he’s seen our whole relationship. I think around October I was doing really well, but when my hip issues started in December things went downhill again.

Me? Maybe

I have noticed with that change in my mental health how differently I’m approached by others in the chronic illness world. When I was doing well and putting more inspirational things out there, I was getting more feedback – mostly positive, but still. Now, when I’m a little more in need of that support, it seems that others aren’t always as willing to give it. People think I’m being extremely negative all the time by discussing what’s going on with me, my fears, and my anxieties. As an optimist at heart, that bugs me.

We all handle our physical illnesses differently, just as we do with our mental health struggles. Mental health is paramount to physical health and vice versa, which is a huge part of why those with issues on one side often end up with issues on the other. There just seems to be a huge disconnect in the chronic illness world between those who discuss one or the other.

A related issue seems to be the lack of support if you don’t fit one mold. A lot of that depends on those you know or what subcategory of illnesses you have, but it’s still an issue. I know some people who have been treated poorly because they’re able to do more physically, but I’ve also seen that go the other way. Right now being laid up, I see it a lot more.

Being MIA from being active is driving me nuts

In line with that, there are those who believe that if you’re positive you’ll do better. There are studies that go along with that, but that also state not to deny your emotions… Personally, if I hold emotions in, they build until I have a major mental health issue or flare up physically. I’m not the only one who knows/thinks that you have to give yourself permission to deal with your feelings.

There is a difference between encourage positivity and kind of pushing it on people, remarking things akin to “if you just focus on the good/light/etc, you’ll feel better.” That type of thinking is actually a form of victim blaming.

It’s not as easy as a choice

It’s so similar to when someone says “my uncle’s brother’s former roommate had that and he just started thinking happily and he’s fine now.” It really bothers me, especially always being someone people refer to as the ‘Pollyanna’ of our friend group or at work, etc.

I think we all know the problem with that type of thinking. It invalidates all the hard work we’ve done to try to get better. If someone suggests copper bracelets or what have you, they may want to truly find something to help you. That’s great and I love that there is support there, but it’s misguided and misdirected. Again, it invalidates your hard work, your feelings, etc, and you end up having to put on a happy/polite face so that people don’t get frustrated with your response.
Telling someone to ‘choose’ happiness invalidates the emotions they are going through. That’s not what we should be doing in the chronic illness community or as loving and compassionate people in general, not even close.
If you want to encourage others to be happy, that’s great! Encourage them to find things that make them happy, to try new hobbies they’ve wanted to get into, or to practice self care/love/compassion. Be there for them when they’re going through hard times. There is a difference between support and lecturing, and advice without the support is the latter.
If you want to encourage or coach someone, you have to acknowledge what they’re dealing with. You can’t simply say things like “Oh, it’s not that bad. You’ll be fine.” Invalidation does not work. Active listening, compassion, and empathy do.
I think it’s funny that these are things we want our doctors to do, and yet we as patients don’t do it to help each other!! We cannot honestly afford to be hypocritical when we’re trying to change the whole healthcare system!
I would love with all my heart to be ABLE to choose happiness over my depression and anxiety. I honestly would love nothing more than to be as calm in the face of adversity as my stepmom or handle frustrations as well as some of my other chronic illness friends. Believe me, I’m not choosing to feel the way that I do. I’m not choosing to lose sleep over not handling situations correctly or coming up with a great comment I should’ve made for a conversation I had with someone two years ago or to want to cry when I’m alone.
I’ll admit a lot of that is not helped by uncontrolled pain with this hip though oh my god. It keeps me up and my brain tries to keep me ‘entertained’ in the meantime.
Not being in a position to choose happiness, I ask that we stop acting like it’s always a choice. The idea of some methods of promoting positivity being akin to victim blaming isn’t going to be a popular one. Many people won’t see it that way, and that’s fine. I fully acknowledge that my ideas on this aren’t for everyone. I recognize that I’ve lived a very different life from many other people. I’ve been through all sorts of abuse and, honestly, could probably add a bit of PTSD to my mental illness repertoire. Not everyone deals with these issues, and some people deal with more.

Honestly I just really hope that this post gets people talking about mental health more than just stating that there is a problem with how we approach it as a society. We need to start asking how to treat others and ourselves with more compassion. I’ll start – Thursday at my appointment with my primary care doc, I’m going to ask about medications for depression. Things aren’t super horrible right now, but they’re not as good as they were… and being laid up and dealing with recovering from a surgery is going to make them worse. I’m going to take some proactive measures and see if I can’t get myself to a better place mentally with medications since I can’t balance it on my own with coping mechanisms and meditation. They both help tremendously, but not enough.

Have a cuppa!

If you’re looking for resources on self love/care/etc, wander up above to the resources page.

What do you think? Are you an optimist, realist or pessimist? Does thinking positively help you, or does it frustrate you when people suggest that as a solution? What’s your experience been like?

Perhaps more importantly, what are you going to do to start showing more compassion and empathy towards others?