how to support someone with a mental illness

Sunday, 05/28/17, 10:22am

Oh blog. Dear dear blog. You dear dear readers and loved ones who have stuck with me through, what I believe was the worst of it, and I think I'm close to finally coming out the other side. I love you all for sticking with me, despite my illness causing me to push people away so much. I now understand, after fighting this illness for so long, what it is that helps me the most.

And I can look back on my behavior all these years and I can see my mistakes but I can also see why I made them and what I was looking for.

I feel amazing. If I didn't know any better I'd wonder if I was manic, but I know that's not it. I can recognize the emotions in myself and I can better label them now. We also think this latest antidepressant might just be starting to kick in.

I should explain. There's so much to explain though. I have to do it right, because this may still be a hard post for all of you to read.

Let's start with a couple things. What I have to say, I think I know a lot about and I want to tell you why I think that and why I think I have the authority to talk about it. You know I have depression and anxiety, right? You may assume some things about my depression and anxiety, and the best thing I can do is share about it and hope that you understand more and assume less. And you may know that I'm an engineer, so you can probably assume that I have a fairly logical and analytical brain, which may or may not give you assumptions about me. I have seen, firsthand, my whole life, how my emotional side and logical side have been in conflict. And I think I finally know how to resolve them.

What I have to talk about is empathy, something I've touched on in this blog, but something I didn't fully understand until now. Many things have led to this "epiphany" I keep talking about. I've been feeling frustrated by my illness and I feel like a burden to everyone around me but part of the reason I feel that way is I see myself rejecting their help as I get worse and worse and I feel awful about that because I want to accept their help but it doesn't feel helpful to me, for some reason I can't figure out. It's been really really hard, but as I understand empathy more, in this last week of epiphanies, I can better empathize that the people helping me have also been scared to death by my illness and my rejection of their help. They see me deteriorating and they don't know what to do about it.

So, quickly let's have a little bit of history. I grew up not understanding mental illness. When I started feeling suicidal when I was about 12 or 13, I had no idea what to do with those feelings. I knew that I shouldn't have these feelings, they certainly felt scary and wrong to me, but I was terrified to tell anyone because I didn't know how they would treat me, because to me, this was me, not an illness. So I didn't tell people. For a really long time. I figured out, enough, how to reject those feelings and be happy and choose to be happy and pretend like all that stuff had never happened. I was happy in high school and college because I chose to be happy and when I was met with people who were depressed at that time, I couldn't understand what they were going through, and I, along with everyone else, couldn't help them either.

Then after having kids, those awful, scary feelings came back. I couldn't seem to choose to be happy anymore, but I kept trying to. I was like, ok, I'll get the minimal help I need and continue to choose to be happy. And I kinda did that, somewhat well, or at least it appeared that way to everyone else. The people who saw me depressed knew I wasn't all the way better, but I was functioning, enough.

My therapist has mentioned several times that I don't seem to accept my illness. All the scary thoughts I have about myself and the reason I usually go down that hole even further is because of this ridiculous belief in me that this is all my fault. And, as it turns out, it's been reiterated to me over and over and over again by the stigma that's out there.

Let's talk more about stigma real quick. I believe that it is something that is so pervasive, even with the improvements in mental health advocacy over the years. It's something that doesn't actually seem to get better because as mental healthcare improves, we also set higher expectations on the patients to "get themselves better". And that's such a ridiculously weird expectation. We see people who are so far gone with their mental illness, and we can't empathize with that situation because we haven't lived their life. We don't actually know what that person has tried and we don't actually understand why they've chosen the care they have.

The reason I call this stigma is we don't treat people with a physical illness the same way. We don't argue with cancer patients about the care they've been getting, usually, if they are seeing the experts. But then experts in mental illness aren't perceived as experts because mental health has to do with human behavior so why do people need experts for that? And suddenly, everybody feels like they need to help but of course most people aren't qualified to do so.

Let's try some empathy on real quick. In the last few days or so, I've been applying it everywhere, I've been practicing it more, and I'm finding it's getting easier and easier to do it as I see how it works. So take for example the young teenager, struggling with bullying and suicidal thoughts. They don't know who to turn to, because despite everyone loving them, very few people are empathizing. Because as this person struggles with these thoughts, they become more and more irritable and they seem to push others away more and more. If they don't understand, like really understand, not just logically, that there is help out there and people are willing to give it, they will turn to suicide. Absolutely.

We keep using this language to describe suicide as "committing" or "choosing to die" or whatever. It turns out, that language blames that person every time. They were "selfish", etc. We refuse to humanize and empathize with what that person was going through to lead them to that act, because it's so scary that someone would hurt us that way by leaving us.

Death by cancer is forgivable. Death by suicide is not.

Because yes, suicide isn't an "option", I'm not trying to claim that it is. It's just, we have to find the right language instead of demonizing the person with the illness.

If I tell you that I'm feeling suicidal, you feel scared. Am I right? You feel like it's all on you to fix this and you don't know the right way to do it. So you do what you know best, you remind the person you love them, and you offer some way to help, by either offering to help when they're willing to take you up on it and/or offering advice. But in the case of mental illness and suicide, etc, we rarely offer empathy, because yes, it is so scary and it's almost impossible to empathize with something that is so foreign and so scary.

I find that the best help I get is when that person offers empathy, first and foremost. Before and throughout any piece of advice they have to offer.

My therapist offers things for me to do and to practice in my life, but she is trained and knows to always give empathy first. I talk about how hard my life is, and she says, "wow, that sounds tough. it sounds like you've been struggling with these thoughts for a long time." And I still don't necessarily respond super well to her advice, because usually it's something I need to change about my life. And of course that's hard. But I respond better to her than I do to someone who doesn't offer empathy.

I started sharing about my mental illness at a point in my illness where it probably wasn't quite what I needed. I didn't know that what I needed and craved was empathy. But after taking data on all the help I've received since sharing openly, I've now seen that empathy is the common thread to helpful help.

I don't think that empathy is the key to eradicating mental illness or something. I do think that empathy is the key to eradicating stigma though, and I think that's going to be my message to the world from now on. If you can empathize with these crazy illogical thoughts that are floating through my head because I have this illness that you can't just fix by telling me the right thing to try, then you can start to offer empathy and give me exactly what I need when I need it the most.

My biggest fear like I mentioned is that I can't get better, either because I won't or because I won't accept help or because I haven't found the right treatment yet. I've been looking for other people to tell me that's not true, but of course they can't tell me that because they're almost too scared to talk around me. I've been looking for other people to remind me that this is an illness, it's not my fault, but then as I refuse to empathize with how hard their situation is in supporting me, I'm not invoking the empathy I want people to show me.

The best thing to say to someone with a horrible mental illness is this:
"I am so so sorry that your illness makes you feel that way. That sounds awful and scary. I wish I could help. Please tell me if there's anything I can do to make it better and I will try to do that thing. In the meantime, I will accept you for who you are and accept that you're trying your hardest to reject these feelings and thoughts."

And the best thing for someone with a horrible mental illness to say to people supporting them is this:
"I am so so sorry that my illness makes you feel helpless and scared for me and I know that you want to help so much. And I know you love me. Please know that when I reject your help, I'm not rejecting you. I am trying so hard and I will continue to try and tell you when I need help and get the help I really need."

I love you all. Really I do. I don't want to hurt anyone by what I have to say and I'm not trying to blame others for suicide or whatever. That's not my message. My message is simply this: try to implement empathy in your life, with your spouse and children, with your parents and your siblings and extended family, with your friends and neighbors and acquaintances, and most especially, with people you find disagreement with. If you try empathy, you can usually start to understand where someone else is coming from. And that is an amazingly powerful tool.

I don't expect I've said everything I wanted to say in this short super long blog post. And I don't expect to get this all figured out real quick because what I want to do is an impossible task. I want every person in this world to put empathy first and foremost in every situation they encounter, but that's not going to happen. It's not how our human brains are wired. When we see a scary situation, we have the "fight or flight" response, and it's really really hard to stop that. I've been working on stopping that, every time I get depressed or anxious, and I haven't been very successful so far. I think, I hope, it's going to get easier, as I get better and better at empathy and asking others for what I need. I think, maybe, I'm getting there.

I believe that dreams are sacred. take my darkest fears and play them like a lullaby, like a reason why, like a play of my obsessions, make me understand the lesson, so I'll find myself, so I won't be lost again.

Monday, 05/22/17, 1:49pm, 3:28pm, 4:56pm, 6:20pm

Hello blog.

It's been so long since I've blogged and I've written so infrequently this year, that I feel lost in trying to find a way to write again.

It's been a really tough year. A tough many years. I thought it might be beneficial, for me, as well as you, any readers out there who've stuck with me, to do some recapping today.

I had a primary care appointment today with a doctor who only met me once, last fall, although she'd been assigned as my primary care doctor for several years prior to that. My primary care went to shit, probably at the point of going to college, if I really look back on it. I never had a regular doctor, and when I did have issues, women's stuff, prenatal care when it came time to it, tearing my meniscus and having surgery, and then later, psychiatric care, I always went to the specialist. I mean it always made sense to have my ob-gyn care done through an ob-gyn office. And then I wanted to be seeing a psychiatrist when it because obvious that I had depression and needed more help. I established a primary care physician several years ago after seeing a practice several times for colds/etc.

Anyway. She kinda scolded me today, as she did last fall, for not having primary care. And I'm now at a point that I have 3 psychiatrists at a time, we're reading my lab results ourselves because everything's been ordered by a different doctor, I have a therapist, a sleep specialist, now primary care, and you throw depression and anxiety into the whole mix, and suddenly it's too much. I can see why people stop seeing doctors and stop going to therapy and stop taking their meds and say, fuck it, I need to just figure this out on my own. The primary care doctor told me to consider reducing my sugar intake because I told her I haven't been good about that lately. Well yeah, it's no surprise that I'm eating more sweets, I've been fucking depressed for many years now, with little relief, great, here I am, making it worse with the choices I made, that my depression leads me to. (Sorry for the outburst. I'm frustrated).

Our mental healthcare system really isn't great. It's tough to get the care you need, in a reasonable amount of time, even with "good" health insurance. I can't imagine how tough it is with further road blocks.

So as many of you know, I was somewhat stable on a set of medications for some time before my brother-in-law, my husband's brother, Adam passed away last year, Friday, May 13, after being hit by a train. This was after several years of battling paranoid schizophrenia. Understandably, it was awful. The depression that hit me after his death, the loss of his battle with his mental illness, shook me to my core. In the fall of last year, it became apparent that the meds I was on weren't going to cut it. I tried several more in the fall and was finally diagnosed as "treatment resistant" in January. Over the course of 8 years I've tried at least 6 antidepressants, 1 anti-anxiety medication, 1 antipsychotic, and at least 3 off label drugs including ketamine. I've done years of therapy and continue to do it, I've tried vitamin supplements and yoga and mindfulness and CBT and diet/exercise and workbooks, I did TMS, we've continuously ruled out medical things and we're still working on the sleep thing. As it turns out the at home sleep study was inconclusive but gave reason to do an in lab study which of course can't be scheduled until July. Great.

And now, we're getting ready to start ECT. If you don't click the link, I'll give a brief explanation here, but I also do suggest reading what I linked. I'm planning to start ECT, or electro-convulsive therapy, on Monday, June 19. I'll be having treatments 3 days a week (Monday/Wednesday/Friday) during the acute phase of the treatment, which can last anywhere from 2 to 5 or 6 weeks. During the acute phase, plus two additional weeks after, I'll need 24/7 supervision. So, Nasser is planning on taking a leave of absence from work for much of the summer, and the kids will be in camps during the weeks. The procedure is done under general anesthesia, and they'll be passing electrical currents through my brain, which induce a brief seizure. The biggest and likeliest side effect is on short term memory. We don't know how bad it will be, but that's the main reason for the 24/7 supervision, and plus I can't drive. Oh and some memories made in the weeks or months prior to starting treatment could also be lost.

Oi. It's a lot.

I'm scared of ECT, but almost less scared of the procedure part of it than I was with TMS, strangely. I'm more scared that ECT won't work for me, because I know how that disappointment felt after TMS didn't really work, and ketamine didn't work, and I'm just so sick of things not working. But I'm hoping, at least a little.

We have this big trip planned. We're going to Alaska, by way of Seattle and Vancouver, then cruise with stops in Ketchikan, Juneau, and Skagway, then cruising through Fjords to Whittier, AK. Then we head to Denali, by way of Anchorage to get rental cars, and we'll do the 6.5 hour bus tour thing in Denali, staying at a nearby bed and breakfast. Did I mention we're doing this whole trip with like all my immediate family? My parents, my siblings and their families, and our little family. There's 16 of us, with 5 rooms on the cruise and at the bed and breakfast. I'm excited about this trip, and I'm terrified. I'm nervous about being around a lot of people a lot of the time. I've been avoiding people for some time, and maybe if you were one to judge you'd say that my behavior is contributing to the problem, but I can assure you, the depression came first. And besides, the depression actually is an effing disease, people, let's not stigmatize it more.

It's hard to share openly about my depression and anxiety. Especially because I've found little relief from many treatments. I don't usually offer hope, much, anymore, and sharing takes so much out of me lately. Sharing in person, whether it's with friends, or neighbors, or family, or my therapist, or another doctor, takes so so much out of me. And not everyone reacts or says the things I wish they'd say. I wish the world just had more empathy, less sympathy and pity, less judgement, more of good old fashioned putting-yourself-in-someone-else's-shoes. We're working on it as a family more, at least trying to.

So, I guess that's all I really wanted to share about right now. I'm hoping to get into the habit of blogging more, again, as I've been hoping for many months now, but we'll see. Hopefully I can at least get a few posts about ECT in, maybe one about Alaska before the treatment starts.

"there must be some way out of here" said the joker to the thief. "there's too much confusion", I can't get no relief

Saturday, 05/06/17, 7:31am

Hi blog. It's been awhile. It feels like a long while.

I haven't wanted to blog the last several weeks because it doesn't feel like there's much new to share. I mean I suppose there is, psychiatric care speaking, but my mood has been down for a long time now. I suppose this is what you'd call, medically, a major depressive episode. It's lasted for a month and a half or so now, with very little relief.

It's been hard. And discouraging.

I've been on ketamine for about 3.5 weeks now, with little to show for it. We added a new antidepressant a week after starting the ketamine, but I guess we wouldn't expect much from that for a couple more weeks. Last week, Nasser and I met with another new doctor, to get the conversations started about ECT (remember, electro-convulsive therapy?). So, yeah. The current plan is to get ECT started next month. The reason we're waiting to start it, well, I suppose there's a few reasons. We have a trip planned at the beginning of June, with my family, to Alaska. And if we started ECT now, the treatment would still be going on then and I wouldn't be able to go. As of now, I'm still not willing to give up Alaska. Additionally, I had a sleep study consult scheduled this past week, and we want to get all that figured out. I'm not sure if I ever shared about this. Earlier this year, I did a nocturnal oximetry study, which is simply a test to measure the oxygen levels in my blood throughout the night. I did the study at home, with just a pulse oximeter on my finger. The test was basically inconclusive, but I did have a really weird event that night, around 2am, when my oxygen levels dropped to around 85% suddenly. And it took awhile to recover. Plus my levels, in general, had a lot of ups and downs. They weren't necessarily indicative of sleep apnea, but we do suspect that. I've always snored, and Nasser has noticed at various points in our marriage, times where I seem to stop breathing briefly. So, of course, if I do have sleep apnea, that could be a contributing factor to the depression. I'm scheduled to pick up all the equipment for a full at home study next Thursday, and I'll be doing 2 nights of it.

The other reason to wait to start ECT, is I do want to see how this new antidepressant goes. We know that TMS could have changed my brain chemistry to make me more receptive to antidepressants, so there's some hope. But then again, I feel like I haven't had much hope in quite some time. And even despite the good odds with ECT, I'm not feeling hopeful about that either. It sucks.

I've been trying some deep breathing practice, coloring, reading, distraction methods, getting help from friends and from Nasser. And I feel like nothing works. I feel defeated, discouraged, and I'm scared that I will never find relief again in my life.

I hate to cut off this blog post so quickly, with so little hope in here, but then sharing about how much I think my life sucks right now also doesn't feel helpful. I guess it's back to some distraction methods after this.