Anxiety, religion, and finding calm

I was reading through some of my old blog entries and noticed that it’s now been almost six months or so since I stopped forcing the issue of religion at all and accepted that it’s just not for me.

The part I realized that surprised me: I found the freedom from anxiety and peace that I was always seeking from religion–but I found it within myself.

Perhaps ironically, it was getting a very Catholic tattoo of the Miraculous Medal that was the turning point. It led to me finally giving up on the tortured struggle I’d been putting myself through for nine years.

When I gave myself permission to let go of trying so hard to believe something that I mostly didn’t that I shifted my focus to developing my own sense of inner peace. I do have a pretty strong sense of my true self and the reason for the years-long religious struggle was because I was fighting against what I really believed.

I don’t have anything against people who choose to believe. I think that it’s really childish to look down on people just because they’re Christian. But as much as I wish I could be a devout believer of an organized religion, I’m just not–that’s not the way I’m wired. I still have a few Catholic practices and sacramentals around my home because that’s a largely cultural thing that brings me some comfort.

But I had a really interesting revelation yesterday. I realized that even though I have moments when I’m scared of my husband’s cancer diagnosis, I am also calm about it.

That doesn’t mean that I never acknowledge the potential gravity of the situation. That doesn’t mean I never cry about it. I don’t even know that I can adequately explain the difference, other than to say that my reaction is free of the anxiety and panic it would have caused in me a year or two ago.

I don’t think it’s because of the medication I’m taking, although I’m sure that doesn’t hurt. In truth, my medication helps my depression. But I had to retrain my brain to fix my anxiety.

Somewhere along the way, I learned that my anxiety was almost always an over-reaction to things that hadn’t happened yet. I let my thoughts of “what if” run away from me, which kept me in an almost perpetual state of panic. Even if I wasn’t in panic mode, it took almost nothing to get me there.

My oldest, who also deals with anxiety and is seeing a therapist (about which I’m SO proud), often talked with me about our mutual tendencies toward what we called catastrophizing. We both had habits — which I’m sure he learned from me, in addition to sharing a genetic component — of assessing a situation and assuming the worst possible outcome, despite a lack of evidence.

We started to gently point it out to each other when the other was doing it. Like most cognitive distortions, I’ve learned that it’s often a habit that can be unlearned with some consistent effort. He has also made a lot of progress.

How you react to anxiety–whether your own or others’–either amplifies it or defuses it. If I overreacted to his anxiety (which I sometimes did in a misguided effort to validate him), I actually gave him more reason to believe that anxiety was a justified reaction.

Being mostly free of the anxiety that was once almost crippling is giving me the sense of peace within myself that I always wanted to find in religion.

But because I’ve also started to honor my true self, I’m no longer bothered by other people’s practice of religion. My husband finds Catholicism very helpful and comforting to him, especially as he’s going through chemo and cancer. I’m fully supportive of him doing what brings him peace. Sometimes I wish it also brought me the same peace, but I no longer beat myself up over the fact that it doesn’t.

I’m grateful that I started doing this work on myself. Really, it started more than a year ago, when I realized I was better off with a much smaller circle so I could focus on healing than to be around people who were actively discouraging it. I’ve read elsewhere that when you want to work on healing yourself, you won’t be able to bring everybody with you. But I at least hope that someday they too will do the same work.

The cool thing is that as you grow, your feeling of peace gets stronger. You discover that you are indeed strong enough to handle things like being permanently disabled with a progressive illness and a husband with cancer. Because your peace is inside you, it never leaves.

All those corny things you read about becoming your own best friend are true. It changes all your closest relationships, too: you just deeply appreciate all of them in a way you couldn’t before. You no longer feel desperate and needy but more like they complement you. If I’ve made this much progress in less than a year, I’m excited to see how things will change with more time. How I’ll react if true disasters do happen.

But so far, my husband’s cancer is the biggest test of my anxiety-management skills. And other than a few scary moments, I really do feel calm and at peace.

Finding peace as a depressed parent

Obviously I struck a chord with the last post about being a parent who deals with depression, given the larger than usual number of page views. What I take from that is that I’m definitely not alone.

But if the post seemed a bit gloomy, I think it’s also important to present the other side of the issue: hope.

I believe that most people do the best that they’re able, given the circumstances they have. Maybe that’s naive, but I do tend to believe the best in people.

I’m sure there’s some percentage of the population that truly doesn’t care how they affect others and don’t care about being better. But I think that if you’re reading this and feeling bad about how your depression affected your loved ones, you’re obviously not in that category of those who don’t care.

If you care about how your depression affected the people you love, it can be almost unbearable to think about. That’s actually a good reaction because it means you want to do better. And you can.

But the truth is that nearly every parent messes up their kids in some way. Maybe some people more or less than others, depending on their resources and self-awareness and self-actualization.

I’ve honestly never met anybody who didn’t have some complaints about their parents at some point in their life, whether their parents were too strict or too smothering or too distant. (For the sake of this post, I’m leaving out those whose parents were abusive, just because that’s not a topic I can take on today. But I know you’re out there and I see you and validate you.)

Even people I’ve known who would otherwise say they had good childhoods were still affected when their parents got divorced, for example. Most of us are scarred in some way. What matters is that you learn lessons from how you grew up and change what needs to be changed. As the saying goes, either you get bitter or you get better.

None of this is to say that all decisions are equal or that we can do anything we want to our kids because they’re resilient. Some of us have addictions, whether to the internet or spending or alcohol, that damage our families. Those usually have roots in how we grew up, too–they’re all part of the same effort to emotionally escape the uncomfortable parts of life. Like anything else, though, once you’re aware of it, you can change it.

But what I am also saying is that eventually we have to forgive ourselves for messing up, for not being the people we wanted to be or the parents we wanted to be.

I may not have done everything right as a parent. My kids may have been affected by my depression. But I’m proud of a lot of the things I did do as a parent, too.

I wanted them to know that home was a safe place without a lot of fighting or instability. I was honest about my mistakes (in an age-appropriate way, of course) and I apologized for the things I did wrong. I wanted them to have a good moral compass and to be helpful and compassionate toward others. I wanted there to be a distinction between adult and child, not that one was more important than the other but to keep the roles of each separate.

I didn’t want them to be selfish or greedy but to appreciate all that they had. I wanted them to have a sense that as family, we’re all in this together and everybody has some responsibility. I wanted my kids to gain the competence and confidence from knowing how to do things for themselves. So far, I can say that I feel like a success in all these regards.

I do also think there’s a way to improve yourself, even if you’re not in a place where you can access good therapy or find appropriate medication. You can start some type of mindfulness practice, whether it’s reflective journaling or meditation or prayer or yoga.

I’m living proof that if you put effort into mindfulness practices, it will change you. If you read some spiritual or mindfulness types of books or even websites or books about recovery, it will change your focus. (I’m really loving Russell Brand’s Recovery, which I think is very valuable reading despite being personally unsure about the 12-step aspect and only having “soft” addictions of my own.)

You can’t keep doing what you’ve always done and expect anything to change. You have to put in a little bit of work to get better–even if at times all you can really do is a little bit of work on yourself.

Once you start the work on yourself, the results won’t be instant. Depending on how much you hurt people, it may take a while for them to trust you. Don’t let that faze you; just keep getting better. And when you do begin that work, protect it. You can’t be around negative influences or you’ll fall back into negativity, too.

But what I can say, especially if you’re a parent living with mental illness of some sort, people will notice the work you do on yourself and the results from it. That especially includes your kids. It’s never too late to start trying to learn how to be more in touch with your emotions, to be calmer, to experience less fear, to be more stable. And the benefits of that work are far-reaching and will be a positive role model for your kids. It could potentially change things for generations to come.

Forgive yourself. Then get to work on getting better.

Depression and parenting

I know I just wrote the other day about reflections on my parenting and the fact that my oldest feels like his childhood was magical. And I should probably be re-reading that right now.

But instead, I’m thinking about the effects it had on my kids to grow up with a mom who had untreated depression and garden-variety mental illness. There are so many studies out there about how detrimental it is to grow up with a depressed and anxious mother.

I did try to get treatment, but so many of them either didn’t work or I didn’t like the side effects. Ironically, now that I’m on effective treatment, I can see more clearly that I needed it all along. Choosing to be ill because I didn’t like the side effects of medication wasn’t fair to my kids or my husband. At the time, I thought I had everything under control without medication, but looking back, I can see that I didn’t. I was fooling myself to the detriment of my family.

They say that kids who grow up with depressed mothers are more likely to have depression or anxiety themselves, and what a surprise that my kids do. Even though I’m now modeling how to take care of myself, I wish I had done so sooner for their benefit.

I’ve always had this mentality that I should be able to pick myself up by my bootstraps and just not be depressed, even though it doesn’t work that way. I’m now getting social security disability not only for my multiple sclerosis but also for my depression.

Yet I’ve never really taken my depression all that seriously. And right or wrong, I’ve perceived that nobody else who knew me took it very seriously either. If my parents knew, I believe they were probably too depressed themselves to know how to help me. I am also pretty sure, based on things she’s said, that my sister thought I should just bootstrap myself out of it.

There was even another mom in the online mom’s group I was a part of for nearly 20 years. She was on disability for mental illness and people always tried to build her up and tell her how brave she was, etc. Why wasn’t anyone telling me the same? These moms knew I was depressed, often suicidally so — in fact, that’s what led to them funding my move back here. So I can’t say that they didn’t care because they obviously did. I just wonder if they, too, thought I could bootstrap my way out of it with a change of scenery.

Looking back, I can see that I was already pretty sick when I moved here. But I got worse because of the MS pretty shortly thereafter, and depression is itself a major symptom of MS.

I don’t blame anyone for anything. I’ve forgiven my parents years ago for the things they did that weren’t so great. I understand now that they were doing their best and sometimes made the wrong call, just as I have. I now recognize a lot of what I grew up with as the result of their untreated depression.

They chose to put me in a harsher social environment with people who were not my economic peers so I could have a better education. When you have a bright kid but not a lot of money, it’s hard to know what to do. I ended up doing the same with my kids and it was similarly as hard on them as it was on me.

How can I hold a grudge against my parents when I ended up largely doing the same thing with my kids? Their hearts really were in the right place, as mine was, even if in many cases the outcome of what they did had an unintentionally detrimental effect.

Even when I’ve told a couple people I thought were my friends about traumatic things in my childhood, it wasn’t to try to get them to feel sorry for me or to suggest that I was still resentful about those things. I just thought I was sharing things that would explain a little more about why some things were triggers for me.

I don’t think anyone else is responsible for me but myself. Do I have things in my childhood that kinda messed me up? Sure, but I think most people do. And I’ve been working for the past several years quite intently on trying to move past them and get better.

But the hardest part of seeing more clearly and starting to get better is that you also see your mistakes. And I feel like my biggest mistake by far was allowing my depression and anxiety to go untreated for so long. I hope it’s not too late to undo some of the damage that has done to my kids.

Setting boundaries

I suck at many aspects of setting boundaries. Typically, if someone’s behavior bothers me, I’m more likely to just distance myself from them than to establish that imaginary fence of boundaries.

Setting boundaries requires effort because they will inevitably be challenged and you have to deal with the fallout if people don’t react well to them. When you grow up in an environment where you don’t see people having appropriate boundaries, it’s scary to think of standing up for yourself because you think you’ll lose people.

My failure to set boundaries hurt a lot of my relationships. I saw it most in a couple of friendships and in my relationship with my mom. I had a couple friends over the years who wanted me to be available to them 24/7. I know it’s very reasonable to set limits on your time and not respond to every issue. But I couldn’t stick up for myself and say that.

With my mom, it was really bad early in my marriage. She would often try to guilt-trip me into doing things I didn’t want to do. Or she’d call me, wanting to fight, saying that the whole family agreed with her that I was an ungrateful brat.

I felt like I couldn’t win with my parents because it was never clear what was expected of me, they just told me what I was doing wrong. That’s an area where we all would have benefited from some healthy and appropriate boundaries and some open communication.

I’d sometimes try to set some boundaries–like when my best friend at the time was calling me 5 or 6 times a day while I was working in an office on the Dow breast implant lawsuits. That was not an environment where personal calls were really permitted unless it was an emergency. I tried to tell her the calls were too much. But when I got some pushback, I dropped it–and eventually her, too.

From a string of bad dating experiences in high school where I let myself get pressured into sexual things I didn’t want to do, to not standing up for myself when my oldest child was very hurtful to me, it’s clear all over the place that I needed to set and enforce boundaries. Boundaries can solve a lot of problems. The absence of them creates problems.

Yet setting boundaries often doesn’t feel good. The people you need to establish boundaries with are often the very same people who react badly to them. That’s usually because your relationship has a dynamic where one person behaves badly and the other one just takes it. When you flip the script, it often goes poorly.

But this goes both ways. Being a person with poor boundaries doesn’t just mean I let people push me around; it also means that I’ve been prone to pushing others around at times in the past. When that’s the only model you’ve ever really seen for wielding power, your views get kinda skewed.

I realize that people have set boundaries with me as well when I was being too needy or annoying. They were much needed boundaries, even if I didn’t like them.

The harder part is realizing that I had a big part in the ending of many friendships because of my lack of boundaries. Just as I found it easier to walk away from people than set boundaries with them, I can guess that people likely did the same with me.

Nobody wants to be that obnoxious person who’s hard to be friends with. But sometimes we are that obnoxious person, especially if we haven’t even acknowledged our problems (let alone tried to heal from them.)

So I’m working on getting better. In recent years, when I’ve had things that felt like crises, I’ve worked on dealing with more of them on my own. When I do reach out to someone, I keep my complaints more limited in intensity and duration than I used to.

I’ve figured out that just because something feels like an emergency to me, it doesn’t mean others will see it the same way. The fact that they don’t see my emergency as their emergency to deal with doesn’t mean they’re not my friend. It means they have healthy boundaries.

Even people who deeply care about you can get burned out of supporting you through constant crises. Eventually you either need to stop having so many crises or to realize that other people can’t solve them for you.

I’m learning to keep my emotions calmer than they used to be. That’s been a process I’ve worked on for at least a couple years and is still ongoing. I can tell I’m getting better, but I can also tell I’ll still be working on it for a long time.

I used to think these things were like an on/off switch: that as soon as you decided to change, everything was instantly all good, forever. The people you pissed off before would come running back. The people in your life who needed boundaries would automatically respect them.

But the truth is that it’s more of a gradual unfolding. Setting boundaries requires first believing that you have the right to have them. Tolerating behaviors that you said you wouldn’t usually means you don’t feel you have the right to enforce them.

Or you think that people will leave you if you set boundaries with them. And for sure, some people will leave rather than change their behavior. But the ones who don’t leave are the ones who truly respect you or are willing to work on it with you.

You can’t undo the past. You can’t fix all relationships that were damaged by a lack of boundaries, yours or theirs. If you were the one who didn’t respect boundaries (as I have been at times in the past), you don’t necessarily get to have a relationship with them again.

The challenge is to learn from that so it doesn’t happen again in all your relationships. To get over your defensiveness and moderate your reactions to distress. To realize that if you set boundaries with someone or they set them with you, it doesn’t mean they dislike you or vice-versa.

But some of us weren’t brought up knowing how to do this. Many of us weren’t raised with any kind of emotional intelligence and are trying to figure it out now. We don’t want to be toxic people even if we acknowledge having some toxic traits. It’s really the commitment to keep getting better that counts; not just saying words but doing the work to respond well to boundaries and having the self-respect to set them.

Even if what you learned was screwed up, the only true failure is refusal to change.

Nature vs medicine

I saw that someone recently read one of my old posts. Whenever I see that people have done that, I like to go back and reread what I wrote before and reflect on it.

In the post, I was wondering if I really needed disability and if my symptoms would go away if I got off all medications and started exercising more. The truth is not quite that simple.

I’ve discovered that the most important factor is actually sleep (or lack thereof.) When I have jobs with standard office hours, that’s so contrary to my natural body clock that it causes my insomnia. I get anxious that I won’t wake up on time and that anxiety reaches a point where it’s so strong that even sleeping pills won’t override it. Voila: no sleep and the whole cycle of pain and fatigue begins again or gets worse.

I’ve tried to change my schedule to no avail; I’ve been this way since I was a young kid. I could resolve it with a job that works on almost any other schedule, but few other schedules pay well (unless they’re in fields I can’t do) and it takes away time I usually spend with the family. Not sure how to address that.

But the medication question is something else entirely. For me, I realize that the question isn’t nature vs. medication, as though those are the only two choices. I just needed to be on different medications.

First of all, I had to stop taking so many muscle relaxers. They were too sedating. True, I have quite a bit more pain in my legs now. But I’m learning to work around it. I suffer but in a way that has a worthwhile trade-off.

But I also had to start taking new medications. I’m probably not taking any fewer meds than I was before. I feel vaguely ashamed of that, like I wouldn’t need any meds if I were determined enough. However, the truth isn’t like that for me.

My disease-modifying drug Tecfidera works by reducing inflammation, which means that it makes me better in itself. My brain is already much clearer and less foggy after only a month on it. My cognitive symptoms are better, though that benefit disappears if I don’t get enough sleep.

I finally have medication that’s effectively treating my depression, which has been extremely rare in my past experience. But this drug cocktail (which includes both an antidepressant and low doses of two other drugs, including one for my seizures) seems to work well together.

As a result, I can finally do the exercise I need. The exercise does help. But at this point, I can only exercise as much as I do (walking about 25-30 miles a week) because of my medications. I was too depressed to do so before, even though I wanted to do it.

I also still take a handful of other supplements that are supposed to help MS, like high-dose Vitamin D, biotin, and B12. I see that all these things work together.

I’m working on other things to help as well: meditation/prayer, journaling, setting goals. I try to keep my stress low and get enough sleep. And I’m also trying to cut out junk food and eat more fruits and veggies.

I find that feeling well isn’t just about taking pills and then doing nothing else to get better. I can’t get better with just the pills alone.

I realize how much the natural health camp has influenced me because I feel incredibly guilty for taking meds. Like I took a cop-out because I was too lazy to do things the hard way. But in truth, the only thing that matters is that I can do the right stuff now.

And for better or worse, I need the pills to do well enough that I can take it from there. Trying to get well when I was so mentally foggy and fatigued, before I took the meds, was like trying to run if someone throws a heavy blanket over your head and you can’t see anything or move freely.

Does this mean I don’t really need disability? That remains to be seen. I’d still greatly love to work and to go back to grad school. But I don’t know yet if I can. I’m just glad that I’m starting to feel a bit less miserable.

Complex PTSD, borderline personality disorder and the value of labels

Sometimes labels are good and necessary if they can help us find the right treatment. But I’m also not entirely sure they’re helpful, either, and may be overused.

I’ve read a lot about the link between Complex PTSD and borderline personality disorder, and how the difference between the two can be complicated even for therapists to distinguish.

My husband often thinks that my interest in the topic of personality disorders is unhealthy, especially since I’m so often trying to diagnose myself with one. I can kind of see his point.

The truth is that aspects of my childhood were pretty fucked up. I have since made peace with and forgiven my parents because I now understand that they were doing the best they knew how and didn’t intend to hurt me. At the same time, that forgiveness doesn’t erase the fact that some things I experienced did hurt me in lasting ways.

Socially, my environment was even worse. Being one of the brightest but poorest kids in a wealthy magnet school exposed me to a lot of bullying. I very definitely have complex PTSD from that, no questions about it.

These things are now my issues to heal from. Blaming people won’t fix me. Recognizing where my struggles came from just points me in a direction for healing.

My meeting with the neuropsychologist last week was also very enlightening. He said that given my verbal IQ, if I’d had a more nurturing home environment and my talents were allowed to bloom at school (rather than being the reason for my bullying, causing me to hide them), I likely would have grown up to become very professionally successful. He said that I had a very strong core capability that, properly developed, would have enabled me to earn graduate degrees and have a career that used them.

The ironic thing is that I wanted to be a doctor when my oldest child was a baby, but I thought I was too old to get started at 24. (Ha!) I still regret that I didn’t do it; I would’ve been good at it. And I have a theory that my MS wouldn’t have required me to stop working if I had gone that route.

When I went back to finish my degree, I graduated magna cum laude and I very definitely wanted to go on to even earn a doctorate. I never intended to stop at a bachelor’s degree but I did. That now leaves me with what all of my kids see as a “useless degree,” a cautionary tale rather than an achievement.

But the opportunities for grad school just weren’t there. Not where we lived at the time and it would have taken a Herculean effort to relocate for school with a husband, three kids, and no money. My husband and I talked about this extensively at the time. It was a dream I had to consciously give up.

And my brain was already so used to the cycle of trying and getting defeated that I couldn’t overcome it at that point.

Graduating college with a 3.76 and thinking I’d go on to graduate school and a great career got my hopes up. Being stuck in that crappy town and not being able to get any job until I got in part-time at Starbucks 8 months after graduation was par for the course of my life. The success in school was the anomaly.

It’s really clear why I’m depressed. Maybe I truly have had dysthymia/”persistent depressive disorder” since kindergarten. Maybe it’s a chemical imbalance in my brain that needs to be drugged all to hell until I can’t feel anything anymore.

Maybe I have a personality disorder because I need a lot of reassurance and fear rejection and I just really want to be liked but expect that I won’t be.

Or maybe it’s that I was a plant potted in hostile soil, trying hard to bloom and flourish in spite of where I was and what I was up against.

Getting back down here to Texas where there are more job opportunities was part of my perpetual effort to keep getting back up and trying again. I went really big that time. I had some crucial help from friends, but like college, it was also a time where I put in a huge amount of effort to achieve a goal.

Yet somehow I wound up back at home again with a low-paying patchwork “job” that I didn’t want. Just like in the place I left.

Up until my horrific MS relapse in August 2017, I was still trying to rebuild. I still had hope that I could do something with my life that mattered. I got my acceptance into a Masters of Social Work program while I was lying in the hospital. I obviously had to turn it down. At first, I thought I was just postponing it, but now it’s pretty clear that I’m not going back.

The degree of memory loss this disease has caused me has pretty firmly nailed shut the doors to grad school and all my career plans.

If I’m depressed, is that really biochemical? Or am I just still in mourning? Things were always hard, ever since I was a young kid. And I always kept getting back up, heroically trying anyway. Fighting against whatever harsh circumstances I was put into. And it doesn’t look like that will change for me anytime soon.

So bringing this back to the topic at hand: does it really matter what label you give to someone with mental illness? You may see the outward manifestation of it and that might be very disruptive and unpleasant. But if you scratch the surface, there’s almost always some type of unhealed trauma. There’s almost always some other explanation.

In earlier generations, there was less awareness of personality disorders. Anais Nin, for example, is a textbook case of histrionic personality disorder. She was manipulative and selfish and thought her diaries were fascinating just because they were her thoughts. She cheated on people repeatedly, even being married to two men at once. Her incestuous relationship with her father was clearly the trauma that explained why her behavior was so destructive to others. But back then, they just said she was “eccentric” and “libertine.”

The grandfather I knew who had now-obvious undiagnosed and untreated PTSD upon returning from the war just terrorized his family. They didn’t know what PTSD was back then. There wasn’t any psychological support for him or his family. It just was what it was and they just tried to cope.

I don’t actually think any more people have personality disorders now than they did before. (I do think that certain things in our modern culture celebrate traits that could be called narcissistic, though. Selfie culture is normalized but not healthy.)

We do have more depression now, in part because our social support networks have all eroded. And because the internet (lovely, lovely internet…) has made it easier to be isolated and have hundreds of “friends” we may never meet.

But I believe the same basic traits have always been present in society. There have always been people who jumped from one relationship to another in short succession, but now we might look for other coexisting traits so we can assign a label like borderline personality disorder. It’s still considered largely incurable, so what is the point of the label?

We don’t have more personality-disordered people now. We’ve just come up with ways to classify people who have always existed. The people who could be defined as having these “disorders” always thought they were fine the way they were before. Even if their traits made their lives harder and caused pain to their loved ones, it was just who they were. In that regard, most people with so-called personality disorders haven’t changed much. The people who don’t want help won’t seek it out.

But the worst thing is seeing any of these traits in yourself and wanting to get rid of them. Sometimes all that requires is time to grow up and mature a little bit. But sometimes it also needs therapy, lots and lots of therapy. And this society’s mental health fabric is absolute shit, so only people with enough disposable income will get the help they need. And the rest of us are left fighting hard against occasional suicidal impulses, trying our best with sketchy DIY treatments that don’t work very well.

The rest of us will muddle along, trying to get better, trying to both cause and experience less pain. If that’s you, like it is me, I don’t have any good advice. But in case nobody’s told you today, it’s okay. It’s all okay. You’re doing the best you can in a world that’s sometimes pretty harsh. Breathe.

Denied

I got my decision back on my disability claim and I was denied. I don’t know why yet because I haven’t gotten the letter; I just found the info on the social security website.

On the one hand, I’ve been prepared all along for a long fight, since that’s the result in the vast majority of cases. On the other hand, I thought that the findings of the doctor they sent me to would carry a lot of weight, since she felt I was a clear-cut candidate for disability and it was her job to weed out the fakers.

I’m sure that once again, my previous doctors failed to submit my results. For one thing, they did that last time I applied a couple years ago (an application I cancelled because back then I still really thought I could work.) And this time, I requested a copy of my records for myself from the same neurologist and never got them, so I doubt they sent them to social security either.

I also requested to have my records from my doctor in Michigan sent to my current primary doctor, and my Michigan doctor did not respond to the faxed request. I doubt they would have sent them to social security either. I don’t know why I have so much trouble getting copies of my own medical records, but it’s really troubling to me.

I looked up some stuff online after finding out about the denial. One advocacy group that represents people pursuing disability had a questionnaire asking questions about my particular case, and based on the results, it said they wouldn’t represent me.

Their reasoning was because I had not seen enough specialists recently enough. Since depression is one of the things I claimed, I also should have been seeing psychiatrists and therapists on a regular basis. But how do you do that when your insurance is terrible and you don’t have a couple hundred extra dollars every month to spend on seeing doctors?

There’s also the fact that I don’t see what good it will do to see more doctors if the ones I do see won’t even release my records. I have definitive advanced MS, confirmed by both multiple MRIs and a spinal tap. I’m obviously not making it up. Every neurologist I’ve ever seen has said that based on my MRI, they don’t know how I’m still walking. But I guess if they never send those records to social security, it doesn’t matter if I have proof or not.

It really feels like I’m completely screwed either way. I can’t get medical care without better insurance and more income. But I can’t get better insurance and more income unless I first get the medical care. It’s like a circle. Maybe if I could afford a couple years of good therapy, I might be able to overcome the depression (since it doesn’t respond well to medications.) But as usual, I’m limited at the starting gate by lack of money and access to good medical care.

I used another attorney finder specific to disabilities and entered the details of my case and that also said they didn’t have any attorneys who would work with me.

I did find another disability attorney separately, so I guess I’ll contact them and see what happens. But what if they also say they won’t represent me?

I have to admit that all of this is sending me back into denial again. We need income, period. We have a significant shortfall on just my husband’s income alone. Yet I can’t do the freelance work I used to. I try and my mind just won’t focus. I can’t put words together in the order that I used to. In truth, even the amount of freelance work I have is still significantly less than what I’d get from disability, and I can’t even do that.

I feel like such a loser. The doctor social security sent me to said that my depression and cognitive issues would clearly make me unable to work. But nobody else agrees. And I can’t figure out why working full-time took such a toll on my health that I’m still not recovered from it. Am I making it up just so I can say I can’t work?

Then I start asking myself if I’m really that sick anyway. Maybe if I had some other full-time job that wasn’t like the one I had earlier this summer, it wouldn’t affect my health so much. Maybe I could do customer service work at home instead.

I start to wonder: am I really sick or am I just depressed? And if it’s just depression, why can’t I kick my own ass hard enough to do what needs to be done? If my husband died and I was without his income, would I still have the luxury of not working?

After all, isn’t it a privilege not to work? I want to be working and I feel completely useless because I’m not. I have deeply internalized views of people like my sister, who say that many people on disability are just scamming the system. When I saw her last month, she asked if I really needed disability, since I had almost always worked at home anyway and that was easier. Maybe she’s right.

Actually, what I really want is to go back to grad school. Become a full-time librarian or counselor or even a hospital social worker. I don’t want to work at home anymore; I want to have some place to go. I’m quite depressed about the fact that I don’t, but my desire to regularly leave the house isn’t enough to overcome my depression, either. I feel like I’m circling the drain, like it’s just going to get worse from here, whether I get disability or not. And I don’t know if my brain health is such that I could go back to school or have a full-time job.

When you look back through my earnings history over my working career, I’ve rarely earned much. Certainly not the amount of money you would expect from someone with a bachelors degree. And is that because I’ve had really severe depression since childhood? Or is it just because I’m lazy and on some level don’t want to work?

If I could just motivate myself more, maybe I could work full-time. Plenty of people with MS and depression still work because they don’t have the option not to. I am giving myself the out. Maybe my work ethic just sucks.

In truth, I can do fine with part-time work where I don’t have to be on my feet and can get bathroom breaks whenever I need them. But for the next couple years, I have to be available to drive the kids from school, so most part-time schedules are out until then anyway. And part-time work won’t provide the income we need.

And in the meantime, social security thinks I can work full-time. Maybe I actually can. It’s not a clear enough case for them to give me the benefits. So that is pushing me back really hard into the denial camp. My illness isn’t affecting me that much compared to people in wheelchairs. I don’t have to catheterize myself like many MS patients do.

If I took the only disease-modifying drug the neurologists think might work for me, maybe I could work full-time. Of course, I’d have to be able to afford multiple specialist visits and multiple MRIs each year, which I currently cannot. But maybe the meds would improve my condition so much that I could earn much better money than I ever have and cost wouldn’t be an issue. That’s not how the drugs say they work, but I can’t honestly say I’ve tried everything yet. Maybe disability is giving up too soon.

Maybe I only feel sick because I don’t exercise enough. Maybe both my MS and depression symptoms would be completely manageable if I followed some nutrition and exercise program. The fact that I find both difficult to stick to is just because I don’t have enough willpower, which should be something I can overcome.

I feel like I just need to try harder to pull myself up by my bootstraps, dammit. Then everything would be okay. But I feel like I’ve been pulling myself up by my bootstraps my whole life and those bootstraps are getting weak. I’m just so tired of fighting.

The disability exam

Today was my long-awaited exam by the Social Security examiner. It revealed some things I had never really put together but which now make perfect sense.

Interestingly, it was a mental status evaluation, not a physical one. It was very in-depth and took about an hour and a half (although 20 minutes of that was how long it took me to fill out three pages of answers to their questions because my handwriting has gotten so difficult.)

I was honestly afraid that my problems wouldn’t be apparent enough because I can often appear pretty normal until a person spends enough time with me to get a fuller picture. But the examiner really looked at all aspects of my history.

She determined that I have persistent depressive disorder (which is classified as more constant than major depressive disorder) and generalized anxiety disorder. I already knew I was depressed since I have been since kindergarten and I knew I had generalized anxiety disorder, too.

She also did some tests like saying a series of numbers and asking me to repeat them back in reverse, or telling me three objects and asking how many I could remember 5 minutes later. Based on the results of this, she said I had significant problems with short-term memory.

This doesn’t surprise me at all, since at most of my recent jobs, I’ve annoyed my coworkers by asking them for constant reminders of how we’re supposed to do something.

She said she definitely thought I should be approved for disability and even said that I was “the kind of person the program was made for.” The fact that she thinks I qualify doesn’t guarantee that I will be approved on this round, but it does improve my chances significantly and it means that I will definitely appeal if I’m denied at first.

She did tell me some really interesting things, though. One is that she could tell that I had a baseline of being highly intelligent and that I probably used to be great at the kind of memory questions she was asking (very true.)

She also said that it’s likely that I managed to muddle along with work for all those years despite my severe depression and anxiety because I had coping mechanisms to keep me somewhat functional. When I got sick with MS and the memory loss set in, it just was too much for my compensating mechanisms to be effective anymore.

I think that was the most surprising part, because it recast the narrative I’ve always told myself. I’ve bought the viewpoints of people who said I could achieve more if I just pulled on my bootstraps a little harder. I always blamed myself for not trying hard enough. I called myself a slacker. I thought that the fact that I completed college with honors was proof that my major was just easy and that anyone could do it, but also proof that I was capable of maintaining that level of achievement indefinitely. I always thought it was just an issue of attitude and I’d be more successful if only I could become more positive.

The way the doctor reframed it is that it was really admirable that I was able to manage as well as I did before I got sick, considering my level of impairment even then. She said that my mechanisms to compensate for the mental aspects of my illness had to have been really well-developed so I didn’t completely fall apart.

And suddenly I saw myself a little differently, maybe even a little brave. Instead of beating myself up for what I haven’t been able to do or accusing myself of just making excuses, I can finally admit that I’ve been struggling for a very long time. My whole life, actually. From that perspective, the amount of things I’ve been able to accomplish are really pretty remarkable. It’s like I’ve been trying to climb a mountain with a heavy backpack and I was actually doing somewhat okay, but the cognitive impairment from the MS was the final load that made it too heavy.

I am so lucky that my husband is understanding and patient. He has come a long way in our marriage in grasping what commitment is really about, as have I. But I know that a lot of people with either MS or any kind of recurring mental illness are not as lucky as I am.

After the exam, there is no question anymore. I can’t beat myself up for not trying hard enough (which isn’t to say that I’ll immediately be able to stop, haha.) I can’t say that I’m just lazy. Like my husband said after I told him about it, even if they deny me disability and I have to appeal, this examination proves that I am disabled, with or without the benefit payments.

That’s a hard thing to wrap my head around. I have to figure out what my next steps are now. I have to decide how I will define myself without work. Luckily I’m not very money-oriented, so I’m not too sad that I’ll probably never make a lot of money.

At the same time, I’m going to fight hard not to become one of those “poor me” people who’s solely focused on being disabled. That would be a bleak life and life is hard enough already.

What’s next for me if I’m not always going to have to focus on what my career will be or how I’ll make money? Maybe I will finally be able to rest, to let go of some of my stress. Maybe I’ll just set plan some regular activities for self-discipline and spend the rest of the time enjoying my life and trying to serve others.

I honestly couldn’t have asked for a better outcome from the social security exam, but it definitely surprised me. It completely legitimized my struggles. Maybe now I can legitimize them, too.

Mental health, addiction, and art

I’m exploring the themes of mental health and addiction a lot more lately. I think it first began when I was in previous recovery groups because of my relationship to other people in my life who were battling addiction. I haven’t participated in such a group in a couple years now, but I was interested in doing something with my life related to that.

I had been accepted to grad school to pursue my masters in social work to become an addiction counselor when I got sick with my worst-ever MS relapse last year. (Literally, I got the acceptance letter to begin that semester while I was still in the hospital; I can still see it on the timeline on my social media.) That relapse required months of physical and occupational therapy to even learn how to use a pencil again, so that dream was put on hold.

I thought it would be on hold indefinitely, but now I’m not so sure. I think I had to go through an additional period of darkness that would allow me to learn more about how to heal myself before I could understand how to help others. The seriousness of my relapse last year took me to a new low point and I had to regain my desire to truly live.

I’m not certain that I’ll still pursue the grad degree because I did apply for disability and I don’t know if I can work full-time. And although I’m not sure I qualify as an empath, I am very prone to taking on others’ problems as my own and not being able to shake them off. I’m not sure I’m strong enough yet to heal someone else.

What I’ve realized over the past few years (and especially in the last one) is about the link between mental illness and addiction – and the fact that they’re often both more prevalent in artists. Nobody becomes an addict if they don’t also suffer from mental illness. The addiction is generally a very crude coping mechanism the individual develops just in order to survive the torture in their heads.

I haven’t ever had an addiction problem, but I’ve definitely had mental illness problems that haven’t been helped by much of anything. I’ve tried all kinds of ways to stay numb to distract myself, though. The arrival of the internet in my life in 1995 was the perfect distraction. But I’ve always had either the gift or the curse of being incredibly self-aware, even in the midst of my attempts to distract myself. I mostly stayed functional but had periods in which I was hanging on to life by broken fingernails, not sure I would make it.

Somehow, I did. I never really lost the belief that I could get better; I just didn’t know how to do it. Little did I know that more pain would finally teach me. Facing each painful experience was peeling back another layer of unhealthy dysfunctions I had used as a shield.

I went through a very difficult period in the past few years, culminating with the devastating MS relapse last year in which I lost a lot of function. Yet, for as difficult as those times were, I can see now that they had an important purpose. I came through them with a new, greater degree of wisdom. I changed a lot and can tell that I continue to do so. I have developed the ability to have greater control over my emotional reactions: bad things are no longer the end of the world and often they don’t even ruin my day anymore.

I’m getting a better sense of my responsibility to help others. I can now look at what they really need, instead of imposing my own way of “helping” on them. I’m learning how to listen.

In short, I had to go through a lot of pain and deal with it before I could get to a point of being more mentally healthy. (Still a relative measure, for sure, but I’m leaps and bounds beyond where I used to be.) And as I’ve done so, I realize that the artistic side of me that has always been there is re-emerging, stronger than before. I write things that I want to every single day, which I haven’t done in years (decades) and that feels like a rebirth in itself. Art and faith are both becoming prominent parts of my life. I finally feel like I’m becoming a more whole person; I’m becoming okay. And now I’d like to help others learn how to be okay, too.

One of my role models for what I’d like to help people achieve is John Frusciante. For people who don’t know him, he was the guitar player for the Red Hot Chili Peppers during several different time periods. He battled heroin addiction successfully and has maintained sobriety through spiritual self-discipline and healthy living. He’s one seriously wise mofo, from everything I’ve read about him.

Whether you’re a fan of the Chili Peppers or not (I appreciate several of their albums, but the last one I really enjoyed was By the Way in 2002), this performance was when I think they were at their peak. If you want to watch it, the music starts at about 2 minutes in. Frusciante also does this cool thing where he switches from electric to acoustic guitar part way through. He’s immensely talented. The song is “Venice Queen” and it’s about death, but beautifully so.

https://www.youtube.com/watch?v=ljrgs4TzkTQ&w=560&h=315

This song is not only the band’s peak in terms of musical style and lyrics (seriously, they’re amazing…one of the commenters on the YouTube link posted them) but it is forever linked to the day I had my third son. The pregnancy with my third son was the hardest experience of my life up until that point. I felt lucky to have survived it because my mental health was so bad. I had to have a scheduled C-section with him, so I had to drop off my older two kids with my mom and drive to the hospital alone, which was 20 miles away. I was so afraid I was going to die in surgery, yet also so depressed that it didn’t seem like it would be so bad if I didn’t make it.

This song was what got me through. I remember listening to it on repeat the whole way there and it took me mentally to a spiritual place, somewhere new that made me feel calm and like I was going to be okay. Certain songs tend to stay in my head and that one did. It carried me through a tough birth and having a baby who was briefly in the NICU and a long period of postpartum depression.

There’s another song that speaks to me as deeply for different reasons, but I don’t think it has any component of addiction among the artists who created it. The lyrics to this song are really moving, about what happens when mental illness goes untreated and how much damage it does to the people around them. The song is “The Alien” by Manchester Orchestra.

https://www.youtube.com/watch?v=71U_qjHLM58&w=560&h=315

Art has helped me immensely with my mental health, whether it’s creating my own or enjoying what others have created (especially music.)

I think that you have to understand the big picture in order to see what causes mental illness and how to fix it. Some people may be more inherently wise than others from the start; others may get there through therapy or training in mental health.

But there’s nothing quite like having hit rock bottom and clawing your way back to health, to the world of the grateful living, to give you a road map to share with others.

The truth about the terms “toxic” and “bullying”

I’ve noticed that along with the increased tendency to call things narcissistic, gaslighting, and bipolar when they’re actually not, many people are overusing and misusing the terms “toxic” and “bullying.”

Part of it is that our culture now is just mean. People say rude things to each other all the time (including our president, who is both reflective of this standard and further justifies it.) The things people say to each other are so far beyond what was acceptable when I was a kid that I am often just stunned by it. If you object, people tell you that you’re too sensitive and need to lighten up.

That said, though, I see a lot of people throwing around the words “toxic” and “bullying” in situations where they really don’t apply. I especially see this in the online support groups for victims of narcissists and in memes about mental health.

Many people behave in ways that are sometimes toxic. Sadly, this sometimes includes me. But I think a lot of people don’t mean to do it; again, myself included. I don’t ever mean to hurt anybody. People who are suffering or struggling to get better sometimes say or do thoughtless things that can hurt others despite their intentions.

Sometimes two people have a tendency toward toxic interactions with each other but are normal with everybody else. It doesn’t mean either person is toxic in themselves, just that they have an unhealthy pattern that probably means they should limit their interactions.

But that’s different from being a toxic person overall. Occasional toxic behaviors don’t necessarily mean a person as a whole is toxic. I don’t know if you can tell yet from previous entries, but I really don’t like the idea of characterizing an entire person based on their worst traits (especially if they’re aware of them and are trying to get better.)

Similarly, “bullying” gets thrown around a lot. And bullying is definitely a very major problem that I believe is partly responsible for the increase in suicides, so I’m in no way trivializing how serious and devastating bullying can be.

But it weakens the meaning of true bullying when you say it refers to someone making fun of the way you look (which is just a rude one-time behavior) or someone telling you they have a problem with something you’re doing.

Bullying is “intentionally aggressive behavior, repeated over time, that involves an imbalance of power. Kids who bully say or do something intentionally hurtful to others and they keep doing it, with no sense of regret or remorse — even when targets of bullying show or express their hurt or tell the aggressors to stop.” (That definition comes from this website, FYI.) It also says that the key aspect of bullying is the ongoing nature of the behavior, which leaves the victims feeling powerless and fearful.

Based on that definition, a one-time rude comment can’t be bullying. A disagreement with someone, even if it’s a recurring disagreement, probably isn’t bullying, either.

Having been bullied and having been in relationships with people that had unhealthy communication, you know the difference when you see it. In my experience, being bullied almost always involves fear of that person and it’s relentless. Poor communication or unhealthy relationship dynamics can certainly make you miserable and are usually a sign that you need to do something differently (if not outright get out of the situation), but it’s not bullying.

It’s not bullying any time someone says or does something that makes you feel kind of bad about yourself.

Often it’s a sign that you need to re-evaluate your relationship if it’s happening regularly. But sometimes it’s also a sign that you need to work on improving your self-esteem, learn how to take things less personally, and develop more confidence in yourself.

I say this because, in many ways, I have had to develop a lot of the same skills. I used to be really thin-skinned and take everything super personally. A rude comment from a stranger would send me into a tailspin for hours. I would second-guess myself and replay interactions over and over in my head, unable to let them go.

I still struggle with this, but less often than I used to. It’s something I’m in the process of changing; you can’t just snap your fingers and stop having a problem as soon as you acknowledge it. You have to retrain your thoughts and your initial reactions, and that takes time and practice. And I have experienced myself that when you work on it, it gets better.

But ultimately we’re buying into the larger social problem of people being unable to communicate with each other and assuming others are our enemies. We damage people when we pigeonhole them so much based on certain behaviors, rather than looking at the overall person.

Sometimes people behave badly because they’re assholes. It doesn’t necessarily mean they’re always assholes or that you deserve it or that you have to label them with some kind of psychological issue. It’s often just a snapshot of who the person is in that moment, that interaction. Maybe the best thing to do is just to try to forget it and move on…maybe permanently, if it’s someone you see frequently and they do it on a regular basis.

I think we’d all do better to give each other more grace, including ourselves, and stop looking for more offense than is intended.