Health

Ala Carte Health Care

Prior to Obamacare we had health insurance with a deductible of $10,000 per person per year. The only thing it provided to us was a vague reassurance that if something catastrophic happened, we would have help for all the expenses between $10,000 and 2 million dollars. Mental health was not covered. Maternity was not covered. Birth control was not covered. Dental and vision, not covered. Also my premiums went up every year like clockwork.

We made the switch to Obamacare the second year it was offered. I watched that first year to see if it actually worked for people I knew, and it did. On Obamacare my premiums were about the same as they had been on my old plan, but my deductible per person came down to $3000, and there was a $7000 cap per family. Suddenly a catastrophe which affected my entire family would put me out $7000 instead of $60,000. And there was no upper limit on how much the insurance would spend. Mental health, maternity, birth control, annual check ups, and vision check ups for my kids were all covered. True I still had to pay out of pocket for these things, but all those payments counted toward a my deductible rather than being unrelated to it.

I would have loved to have all those things covered in my earlier plan, but adding things like Maternity care were called riders. They cost more money. Not only that, but you couldn’t add a maternity rider to your plan if you were already pregnant. You had to add it several months before you got pregnant in order for the insurance company to agree to pay for anything. Mental health care wasn’t offered at all, not even as an expensive rider. I suppose that there were people whose coverage was provided by their employers who had coverage for mental health stuff, but I didn’t know any.

That is what the newly-proposed ala carte model for health care means. It means that those who have health needs, like maternity care, will have to pay more than those who don’t have needs. Guess which person will have less ability to work to cover the cost of their health care? Ala carte means that some things won’t be covered at all, or will only be covered at rates which are so high no one who has the issue can afford to purchase coverage for it. I suspect I’d be back to out of pocket for my family’s mental health care.

It is true that year after year I saw increases in my premiums for Obamacare. This past year my monthly premium went up by $600, an increase of almost 60%. That was alarming and has put a serious strain on my budget. I had to drop down to a plan with a $7000 deductible per person and a $13,000 deductible for my entire family. Yet those deductibles are still lower than the ones I had before Obamacare. And visits to mental health professionals count toward those deductibles. Also, I believe that my premiums would have skyrocketed anyway. There are other things driving the increase in medical costs than just giving coverage to more people.

There were definitely things to fix, but prioritizing the profits of insurance companies is not how to help people. Ala carte may help a few healthy people lower their premiums, but it will cost everyone else more.

Thinking About Health, Weight, and Society’s Obsessions

Of late I’ve been paying quite a bit of attention to American society’s relationship to body weight, especially on women. I’ve read articles on body positivity. I’ve seen Whitney Way Thore’s “Fat Girl Dancing” videos, she’s amazing. I’ve seen “Fat Girl Yoga” with another woman who can do things that I’m not currently capable of doing despite my smaller size. I’ve also read some articles that express concerns about the effect that body positivity will have on national health. I skipped all the articles that wanted to teach me one cool trick to lose weight.

I’ll admit that some of my interest has been due to the fact that the last time I weighed as much as I do right now, I was nine months pregnant. Back then my body was carrying around a tiny human being and lots of extra water. Now all that weight is stored in fat cells. I’m still not obese. In fact many people would look at me and say I look fine. Yet I have more fat on my body than I have ever had before in my life. I look at myself in the mirror and work to think body positive thoughts, which is good. Bodies change as they age. I can’t expect my body at 42 to be shaped the same as it was at 22, or even 32. Things soften, years write their stories on my skin in scars, freckles, and wrinkles. I don’t mind the wrinkles, but the rapidity of the weight gain is of concern. It indicates that something is out of balance in my body and it is time for me to find a new balance.

This morning I came across yet another article talking about weight loss and gain. The writer had finally recognized the weight loss industry as a racket where companies who sell weight loss programs actually profit when their clients fail. People come back again and again. I read it and thought “Why is gaining weight a failure?” Weight fluctuations are the natural response to changes in lifestyle. If a person wants to be a particular weight, then they need to be willing to live the life that induces their body to be that weight. Of course all of that leaves out medical and genetic factors which play a huge role in how our bodies gain or lose weight. Some people can attain a weight that makes them happy with work. Others are not able to do so no matter how much willpower they apply to the problem. This is not fair. Life is not fair.

I am very aware that as a person who has spent most of her life in the socially acceptable weight range, I do not understand all of the nuances that factor in to how people feel about their bodies. Part of me feels like this might be an area where I should listen more than I speak. Yet this conversation belongs to everyone. We all have to come to terms with the bodies we have. I don’t think that naturally thin people have it all easy either. This topic is so complex and so emotionally charged that part of me wanted to file my thoughts away in my folder of things I don’t post to the internet.

It is a tricky balance between accepting my body as it is, and striving for better health, which requires making changes that will affect my body shape. In order to reconcile these, I’m approaching it all as an experiment. What happens if I eat mostly vegetarian for a month? What happens if I count calories and teach myself more about the caloric content of foods? Where does my weight stabilize? Do I feel different when I eat differently? How does exercise affect my mood? Do I notice a difference in my depression and anxiety? Is what I’m doing sustainable over a long period of time?

The goal is to find a combination that includes happy, healthy, and sustainable. Note that while being thinner is the likely result of my experiments, it is not my primary goal. I do feel cliché making changes to my eating and exercise at the beginning of January. Yet it feels like the right time for me to do this. My head is clearer than it has been for a long time. It is time to experiment.

Disorders in Hiding

Sometimes autism doesn’t flap arms or drone on forever on the infinitesimal details of one particular topic. Sometimes Autism can look like a friendly kid who calls his friends over and is the instigator of group play. Autism can be wearing the exact same outfit every single day because your clothes are part of who you are and you don’t feel like yourself in different clothes. Often this means duplicates of clothes. Autism can be standing in a group full of people who are all talking and laughing, wanting to be part of it, but they only talk about things you don’t care about. Autism can be refusing to go into the lunch room because it is too loud and ending up sitting in a hallway off by yourself feeling lonely. Autism can be feeling certain that you made an agreement with another person only to discover that they understood what you said completely differently from how you meant it. Autism can be being unable to do an assignment because you can’t wrap your head around how to begin. Then everyone gets angry with you because it looks simple to them. Autism can look like stubbornness and laziness.

OCD does not always flip light switches, count posts, or line things up in rows. Sometimes OCD is becoming actively uncomfortable and antsy if someone else is sitting in the spot where you expected to sit. This discomfort may cause you to lash out in anger. Then you have to face the consequences of your angry outburst. OCD can be carrying all of your books and school papers in your arms because that is the only way you can constantly be sure you have everything. OCD can be not throwing away any school papers and carrying them all in the ever-growing stack because it would be terrible to not be prepared should the teacher ask students to pull out an old assignment from three months ago. OCD can be wrapping every thought with a cloud of tangential and descriptive information which obscures the thing you want to tell other people. Only you can’t skip any of the information because it is all connected. And if anyone tries to interrupt the thing you’re saying, you get angry, because you weren’t finished, and the thing you were saying is important and must be completed. OCD can be correcting the pronunciations of the people around you because if a word is said wrong, your brain can not let go of that word until it is spoken correctly. One of these things is a quirk. All of these things together is a disorder that affects pretty much every hour of every day and every relationship in your life. OCD can look like disobedient defiance, rudeness, and disrespect.

Anxiety does not always worry about things. Sometimes anxiety is a heart that races and palpitates even though there is nothing going on and the person feels calm. Anxiety can be feeling antsy and agitated, like post-adrenaline shakes, even though nothing happened. Anxiety can be imagining a dozen possible futures and making plans to be prepared for all of them. Anxiety can be hyper-organization that other people praise, and which is actually useful, except that it never allows rest, vacation, or breaks. Preparation that never switches off. Anxiety can be needing to leave an event because there are too many people moving around and talking, making you unable to track everything. And you have to track everything, because if something goes wrong, you must be ready for it. Anxiety can be skipping work opportunities because they require face-to-face interaction. Anxiety can be checking up on other people’s work until they get annoyed with you, but you can’t not check because you have to be prepared if they didn’t do their job. Anxiety can look like a nagging and controlling personality.

ADHD is not always easily distracted. ADHD can be so focused on a project that suddenly you realize that people are standing over you angry because they’ve been trying to get your attention. ADHD can be the sound of pencils scratching on paper overpowering the thoughts in your head. ADHD can be deciding that today you will REALLY pay attention and make sure you get all your assignments, only to realize that you missed hearing an assignment because you were busy planning how not to miss assignments. ADHD is being lost in the thoughts in your head. ADHD can mean always feeling lost or out of step because everyone else knows what is going on, but you haven’t any idea what the instructions were. ADHD can be a jittery leg, all your pencils chewed to bits, and fingers that twist and play with whatever they touch, all without you intending to do any of it. ADHD can be lost items and missed appointments because at the important moment your thoughts were on something else. ADHD can look like chronic disorganization, negligence, and a person who doesn’t care enough to get things done.

Depression does not always stay at home lying in bed feeling in a pit of despair. It is not always dramatic or suicidal. Depression can be doing all the tasks that are required of you, but enjoying none of them. Depression can be feeling like things will never be better than they are now. Depression can be binge watching television shows on Netflix, because then you don’t have to listen to your own thoughts. Depression can be playing endless games of solitaire to fill the spaces between required activities. Depression can be deciding to stay home rather than go out with friends because being social sounds too exhausting. Depression can be having friends drift away because you’re not the person you used to be and you don’t have emotional energy to maintain the friendships. Depression can be crying at seemingly random times over things which wouldn’t normally cause tears, like a happy song playing, or the store being out of the cereal you like. Depression can be a messy house because you only have so much energy to do things and laundry didn’t make the list this week. Depression can be not bothering to brush your hair or change clothes because it is too much work. Depression can look like a person who is standoffish, slovenly, and unfriendly.

So if you have to deal with a person and they are awkward, rude, nagging, standoffish,or negligent, pause a moment before you condemn them. It may be that they do have the character flaw you perceive in them. Or it may be that the person is fighting a daily battle you can’t see, and they need your compassion instead of your anger.

Finding the Right Therapist, or How to Recognize You Have the Wrong One

“It takes a few tries to find the right therapist. Don’t give up.”

I was told variations of this multiple times by multiple people. They were people who had struggled in similar ways, so I believed them. Except that it was repeated often, in almost the same words. Following this seemingly simple instruction turned out to be very difficult that I began to wonder. Is this just a platitude? A thing we say to offer hope in a hopeless situation? Ultimately I’ve come to the conclusion that it is not just a platitude. It is a fact and a necessary process. By the end of this post it will be clear why.

I had no good methodology for finding the “right” therapist. Sometimes I went on recommendations from friends, neighbors, or primary care doctors. Though most of those recommendations were “I’ve heard of this therapist and have a vaguely positive impression attached to the name.” The few times I got an extremely specific recommendation from someone who had worked extensively with that therapist, the therapist was invariably closed to new patients.

I was left with trial and error, which is not a great process for someone who is struggling with feeling hopeless. Unfortunately this mirrors the medication treatment process for mental health as well. So we spent a couple of years trying this therapist and that medicine before switching things around. One kid got better, but not in any way I could relate to the therapy sessions she’d had. Two other kids got much worse. Until lately they’ve been better at least partially because of our experiences with therapy.

I’ve now had direct experience with seven different therapy relationships across four family members. At this point I can tell you far more about how to tell when you have the wrong therapist than I can about finding the right one. It finally occurred to me that this is actually useful information. No one told me what should constitute “not working” and so I stayed in several of the therapy situations much longer than I should have. It is hard to make good judgement calls in the midst of emotional chaos. It is even harder to abandon groundwork that you’ve spent effort, time, and money to establish in order to start over with yet another complete unknown. The thought of having to start over kept me doing “one more session” for weeks. So I’m going to tell you the knowledge I gathered from my experiences. Then I’m going to tell you the stories of how the therapists we had were wrong. From the combination you may be able to glean information to inform your decisions.

Knowledge

My experiences are not universal, some of what I say here may not apply in your situation or may be wrong for you. Listen to your own instincts, which can be hard in the midst of emotional chaos, I know. Listen anyway. Only take the pieces of advice that help you. Discard the rest.

It should only take 4-6 sessions for you to build a rapport with a therapist and start doing emotional work that is beneficial. If you don’t feel these things, move on.

It is not rude to abandon a therapy relationship. You don’t have to apologize or even explain. You can say “this isn’t working” or you can simply cancel your appointment and go elsewhere. Therapy professionals will not be offended or hurt. They understand that some relationships just don’t click.

Your therapist should never make you feel judged. If you feel judged you are not safe to find out what you really think and feel.

If you’re helping someone else with their therapy, how they feel about the therapist matters more than how you feel about the therapist.

It is normal to sometimes resent your therapist, but if that is happening week after week, it is time for a different one. Resentment is a sign that you feel attacked, which means you don’t feel safe with the therapist.

It is easier to have a regularly scheduled appointment than to have as-needed appointments. If you need a non-regular schedule, don’t leave the therapist’s office without scheduling your next appointment.

A sign of a good therapist is that they’re willing to change tactics when one is not working.

One of the reasons it may take several tries to find the right therapist is because you don’t know what you need until you start dealing with one. It is an iterative process.

There are different methodologies in therapy, what helps one person will be ineffective with another. Sometimes the therapist is a mis-match because they’re most comfortable with a methodology that doesn’t work for you. (IE: cognitive behavioral therapy when what you need is PTSD focused therapy or dialectical behavioral therapy.)

The financial cost matters. Sometimes a therapist can be wrong for financial reasons, because high cost can give your brain yet another argument not to go. This stinks, but it is true. Many universities have low-cost clinics where their grad students get to practice being therapists.

The therapist should be respectful of the anxiety and emotional energy that goes into admitting help is needed. One who doesn’t answer phone calls or drops you as a client is the wrong therapist, no matter how good they might be when you actually have an appointment.

Stories

Therapist #1: For Gleek. The therapist was young, a grad student. I thought this would help her build a relationship with Gleek. But all the sessions ended up with me and Gleek together sitting on the couch. The therapist spent most of her time dissecting the parent/child relationship rather than digging in to find out the inner workings of Gleek’s thoughts which Gleek hid behind a shield of chatter. I came away from most of those sessions feeling resentful and judged. It is likely I was projecting my own self-judgements onto the therapist, but she wasn’t sensing or solving that. The therapy relationship ended because the therapist graduated and moved away.

Hindsight: The therapy format was wrong for what we needed. It was set up to treat the parent/child system and ended up giving me lots of parenting advice that I already knew and had already applied. The next time I set up therapy I specified individual therapy.
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Therapist #2: For Gleek. She was a woman in her fifties with a long practice dealing with children. I deliberately sought that out because I wondered if my reaction to the other therapist had been an inexperience problem. This therapist was recommended to me by Gleek’s church leader, specifically because the therapist did art and play therapy. I found the therapist good and easy to talk to, but Gleek became increasingly resistant to going. “I don’t like how nosey she is.” Gleek said. Ultimately Gleek was doing so much better (because of medication and changes at school) that the therapist and I agreed we could stop therapy for a time.

Hindsight
: Gleek did not have the right rapport with the therapist, so the therapy was not working as it should. It is possible that the therapist and I could have banded together to push through her resistance. Instead we opted to give her some control. That turned out to be the right call. We did establish that if life gets hard again, back to therapy we’ll go. But we’ll pick a different one.
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Therapist #3
: For Link. I chose to go through the comprehensive clinic at BYU in part because it was far less expensive than other options and we were paying out of pocket for everything. I also thought that a young male therapist might have a better chance to connect with Link. This meant a grad student therapist again. By week four the therapist was having trouble getting Link to open up, so he brought me in for a joint session. It went really well. Unfortunately this meant that the therapist always brought me in for all the sessions. It became relationship therapy between Link and I rather than the individual therapy that Link needed. He needed solutions which did not include me. Also I think that speaking with me was more emotionally rewarding for the therapist than speaking to Link. The therapist could poke at my pain and induce me to open up. He was completely unable to do the same for Link. I kept trying to keep him focused on Link, but we ended up talking about me half the time anyway. It took weeks of me being increasingly stressed and resentful of the therapy, and Link feeling the same way, before I recognized the problem and called the clinic to request a different therapist.

Hindsight: This was a similar problem to the one with therapist #1. We had different visions for what the troubles were. I probably could have had a meeting with the therapist and re-calibrated the treatment, but starting over was less work and Link was more likely to cooperate. Continuing to make Link go to a therapist he didn’t like would have damaged my relationship with Link.
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Therapist #4
: For Sandra. This was actually the same therapist as #2. She hadn’t worked for Gleek, but I’d enjoyed talking with her. The interactions with Therapist #3 had forced me to see that I was struggling, so I made an appointment. It went well. So did another one. Unfortunately she was by far the most expensive therapist we’d gone to and everything was out of pocket. We finally got onto an insurance plan which covered mental health care (Yay Affordable Care Act!) and she wasn’t listed on the plan. I’d paid her prices for Gleek, but it was harder to justify paying her prices for me. So I’d delay between sessions until I was in crisis. Then I’d call for an appointment…and she’d fail to call back. I’d call again and she texted two days later saying “I have an appointment available in two hours, does that work?” It did not work. Also, I’d requested a phone call to make the appointment, not a text. Ultimately these communication issues were the reason I dropped her. If I gathered the emotional energy necessary to call and set up an appointment, I needed the process to go smoothly rather than stretch out for days adding stress to my life.

Hindsight: She was a good therapist, but her business running skills interfered with my willingness to go to her. My next attempt at therapy for me will be an office with multiple therapists and a full time secretary who handles appointments.
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Therapist #5: For Link. This was the therapist we were assigned after therapist #4 went badly. I’d considered changing away from grad students, but decided to give it one more shot. By this time I’d been told the advice about giving a therapist 4-6 sessions to connect, so that was the plan. Right around session four, the new therapist ran aground in almost exactly the same way as the prior one had. Link wasn’t opening up. He’d give answers, but they were mostly shrugs or “I don’t know.” This therapist met with me separate from Link and hammered out a new plan. He started playing games with Link. The whole goal was to connect first and then gradually use that connection to teach Link how to connect without games. Then they could get at emotional issues. It was a brilliant plan. I approved. I think it would have worked. Unfortunately about a month later the therapist made a personal decision that took him out of the grad school program. He worked to hand us off to another therapist, and was as conscientious as he could be, but it was still a big blow to Link and to me.

Hindsight: Not much useful to offer here, except that this process can be hard in unexpected ways.
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Therapist #6
: For Link. This was the therapist that therapist #5 handed us over to. They had this nice transitional plan where the new therapist would attend sessions with Link and the prior therapist. She was a young and pretty grad student. Link met with her twice and told me that he wasn’t comfortable with her. I wasn’t surprised. There had been a young pretty female math teacher at school that Link had refused to go to for help. Talking to people is hard for Link. Talking to girls is even harder. I called off the appointments and put Link on a therapeutic hiatus while some other things settled down in our lives.

Hindsight: Link needed an older brother/ role model and a young female therapist was not going to work in the same way. An older, motherly or grandmotherly woman would probably be fine. Any future therapist selections for him will keep this in mind. I’m also likely to try a therapist with a different approach, such as dialectical behavioral therapy instead of cognitive behavioral therapy.
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Therapist #7: For Patch. I think we began seeing this therapist before Link’s good therapist quit, but I’ve put her last on the list because she’s the only one whom we’re still seeing. She’s a grad student at the same clinic as Link’s therapy. She and Patch hit it off right away. It helped a lot that I recommended that games be part of the therapy. (Having learned from Link’s experience that this can foster connection.) I can tell the therapy is working because Patch doesn’t resist going. Often he is excited or happy to go. Also the therapist usually brings me in for the last few minutes to let me know what they talked through and what would be a good focus for the week ahead. I know that they really are beginning to dig down in and untangle some of the emotional knots that Patch has been carrying around.

Hindsight: This is how you know when therapy is working, life feels easier. It is subtly easier so that you may not even be sure if it being easier is because of the therapy.
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I don’t have many concluding thoughts, except to say that writing up this post helped me to see why it is sometimes necessary to try multiple therapists before settling. Each therapy relationship helps you learn more about what you need and want in a therapy relationship. It is not a failure to need to ditch one therapist and try out another one, it is a refining process. I wish I’d known that when I first started, it would have made the process easier.

Medication is Complicated

It was a routine trip to the pharmacy. I had seven prescriptions to pick up. That right there says something. Somehow a seven prescription pharmacy trip has become “routine.” Three of them had been called in over the phone. Four required me to hand signed pieces of paper to the pharmacy staff. I understand the reasoning behind requiring paper with signatures, yet the need for it adds layers of complication to my life. Any time the prescription needs a refill, I have to call the doctor’s office and either physically go get a piece of paper or plan ahead to allow time for them to mail the paper to me. Add in the fact that the insurance companies keep track of when they last filled the prescription and they won’t fill early, so there is a window of only a few days during which I’m allowed to refill a prescription before we run out. I always try to hit the early end of this window because sometimes the pharmacy doesn’t have the pills on hand and they have to be ordered in. Tracking all of this has become routine. I’d done the math, calculated the windows of time, and taken myself down to the pharmacy to pick things up.

Then the pharmacy register rang up at $500 instead of the $35 I was expecting.

When I picked a healthcare plan last November, I paid close attention to the prescription copays. I picked a plan with $5 copays for their Tier 1 medicines. Tier 2 costs $35 and Tier 3 is $175. It is a system designed to encourage people to switch to the Tier 1 medicines. I don’t really know all the reasons that medicines get assigned to various Tiers. We had some stress in January because my kids had to be switched to a different form of their medicine because capsules were Tier 3, but caplets were Tier 1. Then we had to get special permission for Howard to be on the same medicine because anyone over the age of 18 needs a doctor’s approval, but under that age the insurance company doesn’t require preauthorization. So we jumped through hoops, and settled everyone onto their medicines. And all was well for a couple of months. I was relieved each time I picked up a prescription and it cost only $5. We’d paid much more than that in years past and it had been a financial burden on our family.

“That price can’t be right.” I said.
“You can call your insurance company” the pharmacist said. So I stepped over to a bench and called the customer support number on the back of my insurance card. It was a long phone call with multiple waits on hold while I watched my frozen groceries in my cart slowly thawing.

The systems around health insurance are arcane and complicated. I have to make far too many phone calls because automated systems aren’t as automated as they should be. Yet any time I’ve talked to an actual person on the phone, both for my insurance company and for the government healthcare marketplace, they have been very kind and helpful. The pharmacists are helpful. I end up with this sense that we’re all tangled up together in some weird bureaucracy where the key focus is not on best treatment, but on appeasing the computer system so that treatment can be extracted.

The customer support lady looked up the pharmacy order and found that I’d been billed at a Tier 3 rate. She looked up the medicines and they were all listed as Tier 1. Then she looked at another place and they were listed at Tier 3. Ultimately she had to put in a support ticket to…somebody… to figure out which Tier is accurate. There might have been a change in the formulary listing for these medicines or maybe it was just a mistake. She says she’ll call me back once she hears back. I have her name and number, because I fully expect that in a day or two I’ll have to call her because she hasn’t yet called me.

In the meantime my kids are taking medicine once per day and we’re running out of pills. It may be that the insurance company has changed these meds to Tier 3, which would mean that I have to research and figure out which medicines are comparable and are Tier 1. Then I have to call their doctor and discuss a med change with him, discussing the options and what possible consequences there might be from switching medicines. Then I would either have to drive to Salt Lake City (2 hours round trip) or wait two days for the prescriptions to be mailed to me. After which I then have to make another trip to the pharmacy (40 minutes round trip).

Just today my “routine” trip to the pharmacy cost me 2 hours and significant emotional distress. And I still don’t know how much more time it is going to cost.

So when people accuse parents of putting kids on meds for the parents’ convenience, excuse me if I laugh out loud in derision. There is nothing convenient about this. I would dearly love to be able to skip it all. I wish that willpower, diet, and exercise had worked for us. That would have been lovely. I track and manage all of this medical mess only because I can see that the medicines make a positive difference in the lives of my family. As an ancillary effect, my life is better too, for which I’m grateful. But better is not the same as easy and it definitely isn’t the same as convenient. The minute my family members don’t need medicine anymore I will ditch the stress and expense. I think that some of them will reach that. I suspect that others will need medicine for most of their lives. For this week, I’ll be tracking remaining medicine, waiting for phone calls, and making phone calls. Again.

UPDATE: The insurance company called me back the next day. It was a glitch in their system. The pharmacy re-ran the prescriptions and they came up at the correct $5 rate.

On Unpleasant Medical Screenings

A mammogram is a simple test really. It is a little embarrassing and a little uncomfortable, but the whole thing is complete in less than ten minutes. The hard part is that I spend those minutes thinking about how my sister had cancer and the weeks of radiation therapy that I went through fifteen years ago. I can’t feel completely calm about the process or the report that will come from it. It dredges up old emotion that had settled out. Not my favorite. But the thing is done and I move onward in my day.

Diagnostic Appointment Delayed

I made the appointment three months ago. I made it after a hard day where I realized that I needed guidance on how to help my teenage son shift into adulthood while managing his own particular mix of capabilities and disabilities. I needed a doctor to talk with him about the medicines he takes, so that my son is prepared to make rational decisions about those medicines rather than making reactionary decisions.

A month passed and things did not get easier. We ended up meeting with a general practitioner to adjust meds. I met with the school to adjust his schedule. I learned about programs that become available with a signed diagnosis letter. I was glad to be able to say “We already have an appointment scheduled.” We were struggling and muddling toward solutions, but I knew that an appointment was scheduled with a doctor I trust. I was willing to wait so I could see this particular doctor.

It was all lined up. The appointment was today. I could get the school form signed. I could get prescription refills. Howard went on the run to get the college kid from school. I arranged for my neighbor to pick up the elementary carpool. I’d cleared and defended the day. I didn’t know all the results that the appointment would bring. Maybe a new diagnosis. Maybe a process to switch medications. Maybe just affirmation that we were already doing all the things that were necessary. But at least I knew that I would no longer be waiting for an appointment. We would then be on the patient list rather than the New Patient list, which meant follow up phone calls and appointments would be handled far more expeditiously.

This morning I got a phone call. They had to reschedule. Next available appointment is January 5, twenty-five days from today. I get another month of muddling through and waiting for an appointment. I’m not mad at the doctor. He didn’t want to have stomach flu today. I’m certain he would much rather have spent his day meeting with me. Yet the cancellation of the appointment hit me hard. Today has been hard. Sometimes I don’t realize how much emotion I have riding on an event until the event is cancelled or changed.

I think this is one of the hardest aspects of mental illness. After making my way over the hurdle of admitting I needed professional help for my child, I had to wait. Then I had to talk about the appointment to school staff. Then I had to go explain to a general practitioner why I needed an interim prescription until I could see the psychiatrist. With the appointment moved, I had to have all of those conversations over again. I had to call the GP and say “Would you please write this letter that the school needs?” because my son can not afford to wait until January for the services. I had to ask the GP for a prescription extension so that we won’t run out before we have the chance to meet with the psychiatrist. Across the middle of this, our insurance will be switching over to a new plan on January 1st. This will probably be to our benefit, but it still requires me to adjust for the new company.

I have enough force of will and comprehension of what needs to be done that I can wade through all of that. I want to cry for the families who have no idea how to navigate to get mental health care and who don’t know what questions to ask at the schools to get help. It has been confusing and exhausting. Instead of exiting today with a new health partner and a new course, I am facing another month of stopgap measures. I don’t like stopgap measures.

So we do the only thing we can do, which is to keep facing each day and do the best we can. The good news is that something in the medicine switches, therapy, and schedule switches has been helping. Life is better for him now than it was two weeks ago. We’ll just keep on doing the things that seem to be working until we can have the diagnostic appointment that we need.

Bumps in the Road

Life is rolling along and everything is feeling good, then whump. I hit a speed bump, or a pot hole, or maybe it was both a speed bump and a pothole. Anyway my tire is flat, which seriously impedes my ability to keep rolling along happily. It’ll all be fine. I just need to find the jack and change out the tire. Then I can roll along again. Right now I’m in that moment when I’ve rolled to a complete stop at the side of the road and I’m trying to remember where on earth I keep the jack. I’m hoping it is here in the car with me.

The things which flattened my tire today:

I looked at the list of things I really should have gotten done already, the list of things I ought to do today, and I compared these lists against the actual hours I have available between now and midnight. The numbers of things are far more than the hours.

I thought about the parenting things which I have left to do this week and how they are going to interfere with the work things. Or maybe it is the other way around. Either way something important is going to have to slide.

We had a boom year financially last year. That means that this year we have a boom year for paying out taxes. I planned for it. I saved for it, but the number still feels a bit like a gut punch. I end up revising my plans for what I think we can afford this year. It is time for me to go over the budget again. I’ll just add that to the list.

Related to the finances, all the old anxiety demons have come howling out of the dark places where they’ve been hiding. “why can’t you plan better?” They howl at me. They blame me for spending too much, for not saving enough, for not being as frugal as we once were. And then once they get up a head of steam, they’ll start in on the many and varied ways that I’m a failure as a human being. So I’m spending psychic energy not listening to them and trying to shoo them back into their dark holes. Out of my head forever would be better, but I’ll tackle that when they are not surrounding me in a swirling mob. One at a time I can get rid of them. En masse, I’ll settle for having them shut up.

Howard has been suffering medication-related insomnia which has not helped him feel calm and happy. So we’re tinkering with that this week. The big bill punches his anxiety buttons too. That’s extra fun. His internal howling voices get restless when he’s having a depressed day. So later today Howard and I will, no doubt, be conferencing about these negative thoughts, both his and mine.

That’s it. I really thought there would be more things, but I’ve been sitting here for ten minutes and everything else that has floated through my head lands firmly on the good side of the ledger or is covered by the list above. Howard and I have both been writing prose fiction. He’s under contract. I’m not, but I know I’m writing the book that I need to write. Maybe I’ll find a contract for it later this year. Kiki is home with us for the week, and that is really fun. Link has been taking control of his homework and is going to bring all his grades up to passing before the end of the term even though he was out of school for a month. Gleek is excelling at horseback riding and I see the things she learns there spilling into other areas of her life. Patch hasn’t been showing signs of anxiety. He just earned his arrow of light and will go to scouts for the first time tonight.

So very many things are going well. I just wish there were two of me to keep them all going.

Married to Depression: Additional thoughts and resources

Yesterday I published a post that resonated with a lot of people. Many of those people offered further thoughts and asked me excellent questions. As a result I have a few more things to say.

First, I want to post some links to resources. I’ve actually added these resource links to the bottom of the prior post, because in hindsight I can see that they needed to be there all along. These provide a starting place for people who are exhausted from struggling alone and would love to have help and support.

NAMI is the National Alliance on Mental Illness. They have a page dedicated to helping people connect with support groups and discussion groups both online and in person.

Google also led me to DBSA the Depression and Bipolar Support Alliance. They also have a page devoted to helping people connect with the resources that they need.

There is the ASCA, Adult Survivors of Child Abuse. If a history abuse of any kind factors into your loved one’s depression, it is probably best to talk to someone who knows how to thrive after that.

If you want a faith centered approach to healing, you might consider looking at the LDS addiction recovery program. Reading through their 12 steps, most of it applies if you just substitute “depression (or anxiety, or mental illness) for the word addiction. You do not have to be a member of the LDS (mormon) faith to use these services.

I know there are more resources than these, both locally and nationally (or internationally.) No one has to struggle alone because the world is full of people who’ve been there and would like to help.

My further thoughts:

Several people brought up how sometimes depression can manifest as irritability and anger. This was one of the things that surprised Howard and I when he first took medication. Over and over again I would brace myself for an event that I expected to be stressful and then it just wasn’t. It was little things over and over which failed to make Howard cranky: loud children, dishes undone, lost items. We didn’t see until after it was gone the hundred little ways that depression crankiness was adding stress to our lives.

When Howard and I first started naming and discussing the depressive cycles as a problem to be solved, we spent a lot of time wondering “was it always this bad? Or are we just noticing more because we’re paying attention?” I still don’t have an answer to that. But I wouldn’t be surprised if that is a common stage in the process.

Thirty days makes a habit. This means if your loved one has been depressed for an extended length of time, you’ve forgotten what it is like to live with them not depressed. You can work to revive that memory, but your family habits have adapted to the depression. I saw this when my sixteen year old son was sick for six weeks. When he finally recovered I spent a lot of time re-realizing how capable he is. I don’t have a solution for this, just an acknowledgement that this is really, really hard. Perhaps some commenters will have suggestions for how to keep the memory of happy things alive.

Depression has many causes and therefore many treatments. Depression that is driven by the PSTD of an abuse survivor is a different animal than a rapidly oscillating manic depression caused by brain chemicals. Sadly, having one type does not exclude another. Treatment is often very complex and takes place over an extended period of time. Don’t expect to treat all of it at once, just start in a corner and focus there. People at the resources listed above can help you figure out where to start.

I found myself musing on some of the bad coping strategies that I used to deploy. Most of them were only semi-conscious. If they’d been fully conscious I would have known they were bad. One was to try to counter act a depressive cycle with a crisis. Sometimes the adrenaline from a crisis would pull Howard right out of a depression. Other times it would just sink both of us into a morass of emotion. So Howard would swing downward and suddenly I would be ready to melt into a puddle of incapacity. Some of that was real, but some of it was my subconscious trying to jump start normality again. Bad strategy. Life is not happy when pinging between depression and crisis. Fortunately I left that strategy behind somewhere in my twenties. I mention it here though, because it is a real thing and may be playing into the life of your loved one.

This afternoon I checked in with Howard to see if he felt weird that my post about his depression had gone a little bit viral. He shrugged and said not really. This is why I can say these things now, when I would have been afraid to say them a year ago. I would have been terrified that my words would send him crashing down into depression and then it would be All. My. Fault. Instead I said some things that I felt were important and needed to be said, even though I knew there was a possibility that it would effect him emotionally. But it didn’t. He’s fine. He even said it was interesting to see the depression from my perspective. So all is well. And we go onward.

Married to Depression

I started writing this post six months ago. I started again four months ago. This week I opened it up again. It has been very difficult to get the words right, but then I realized that getting them right is impossible. There is no way that I can convey everyone, regardless of their experiences, what it is like to be married to someone who struggles with depression. The audience is too diverse and the experience is as well. My thoughts and feelings on this matter maybe similar to that of another spouse, or they might be quite different. It is impossible for me to get it right, because there is no “right” when discussing a subjective experience. I can only write about my experiences and hope that something in the story is useful to other people. When I look at it that way, the only way to get it wrong is to not write the post. So I wrote it. All 3000+ words of it. The first part is personal history for context. The rest is things I think will help other people in a similar situation. I put those things in bold for those who want to skim. At the very bottom are links to resources for those who need them.

Howard and I have been married for twenty years. It was not all bliss. Parts of it were gut-wrenchingly hard. In hindsight, many of those horribly difficult parts were directly related to Howard’s struggles with anxiety and depression. Other difficult parts were directly related to my personal stash of neuroses and emotional baggage. Yet our marriage is good. Our life together is more than good. We have built a partnership through the years that sustains us, a business, and our four children. Part of the reason our marriage is still good twenty years in, is because we pulled together when things got hard instead of pulling apart. That required conscious decision from both of us and bucketfuls of forgiveness that we splashed all over everything.

Howard is a bright spot in my life. He makes me laugh. He makes my days better, which is why it hurts so much when this amazing person vanishes into himself and radiates despair or anger. Suddenly instead of having a life partner who is carrying half the load, or even saving me because I’m stumbling, I have a person who is faltering and struggling to carry only a fraction of what he usually does. Not only that, but he radiates the bleakness and it permeates the house, actually creating additional stress and strain. These days we have good strategies for minimizing the impact of a depressive episode. That was not always the case.

The first time I really got to see inside Howard’s pit of despair was on our honeymoon. I was twenty, still trying to figure out who I was as an adult. Still trying to choose which life patterns I wanted to emulate from my family of birth and how I wanted to do things differently. I’d been around depression before with one of my siblings, but my family did not name it. It was the elephant in the room around which we all danced, trying to create a peaceful life. I carried that approach into my marriage. I knew Howard had mood swings. I’d witnessed some during the course of our engagement. But there we were, about halfway through our honeymoon, laying in the dark together while Howard cried and talked. He was letting me further into his heart than he’d ever let anyone before and it was terrifying for both of us. I stared into this deep, dark, seemingly bottomless pit and knew it could swallow me whole if I was not careful. It could swallow us both. And I did not want that to happen.

The next morning the bleakness had passed and my wonderful Howard was back, but I did not forget that the pit was a possibility.

Our family, the new one that Howard and I made together, danced with the elephant for decades. We built habits in the hopes of increasing the good times and reducing the bad ones. We looked for cyclical patterns. We evaluated. Early on I might have suggested therapy of some kind, but Howard had done therapy following the death of his parents and he reported it hadn’t done much for him. We were smart people, surely we could figure out the right diet, or exercise program, or spiritual regimen. All of these things were good management tools and we used them. Sometimes they helped. Other times they were powerless. We were powerless.

It was not until eighteen months ago that we named the elephant. That was when we finally saw this thing that had always been in the middle of our lives and said it was
A. real
B. a problem
C. something we should address.
That shift came because of many things, the most obvious being when our friend Robison Wells began speaking publicly about the mental illnesses that plague him. Rob and a couple of other friends showed Howard that admitting a problem could be a step toward better answers. There was also quite a lot of spiritual guidance and inspiration. Howard and I are religious people and we believe that we were guided. We also wish we’d been a little less thick headed to inspiration when we were younger.

The other thing that shifted was me. I’d been sorting some old emotional baggage (because of inspiration) and finally realized that my job was not to fix Howard, nor to save him. I was to love him no matter what. In fact that was a very clear inspiration directly to me, that Howard is strong and that my job was to love him, not fix him. After realizing that, I changed my answers. When Howard was filled with despair and said “I’m broken.” I stopped saying “No you’re not. It’s fine.” I allowed broken and suddenly let’s get this fixed became an option. Howard no longer had to live up to my need for everything to be fine. He finally had the space to consider and then seek treatment. This is exactly what I mean when I said that some of the difficulties were caused by me, even though I am not the depressed person. He worked so hard to be fine for me.

Howard has a problem with the chemicals in his brain. They sometimes make him feel like a complete failure as a human being, even when everything in our lives suggests exactly the opposite. It means that yesterday was happy, but today is miserable even though nothing has changed overnight. We tried all of the non-medicinal options for nineteen years and we still found ourselves occasionally trampled by the unnamed elephant. It was not good for us, nor for our kids. But a year ago things changed. That was when Howard saw a doctor and we started fixing the chemistry by applying medication, and it worked.

When I say “it worked” that doesn’t mean everything is all better now. Howard still has depressed days, but they aren’t as often and they don’t get as bad. Visits to the pit of despair are a rare occurrence, where they used to be regular. Howard has had the chance to experience a steady happiness where life feels generally good. More important, when Howard is having a bad brain chemistry day, we see it, we name it, and we know how to adjust for it. This is quite different than trying to adjust for an elephant that no one wants to admit exists.

If you have a loved one, a spouse, sibling, parent, friend, partner, who is depressed, and you want to help, there are some things I think you should know. The first and most important is this: You can’t fix it. There are dozens of ways that depression can be managed, healed, or even cured depending on the causes of it, but you can’t fix it for them. The depression exists in your loved one, maybe it is chemical, maybe it is situational, but it is inside them, not you. I tried to fix Howard’s depression. Believe me I tried. For eighteen years of marriage I adjusted all of the things I could conceive of adjusting in the hope it would prevent or alleviate the dark days. He’d have a dark day and I would clean all of the things because then a dirty kitchen wouldn’t add to the stress. I’d manage his schedule. I’d take over chores that were usually his. I’d hug him when the shape of the darkness allowed for that. (Sometimes it didn’t and he would flee from all touch.) I argued with him when the dark manifested as verbalized self-loathing.

My efforts helped some. I could see that they did, which is why I kept trying harder. I kept hoping that I could exert control over this thing. My efforts also masked the problem. When your loved one says “I’m broken.” It feels like the right answer is “No you’re not. Of course you’re not. Everyone has bad days.” The more powerful and helpful answer is to say. “Yes you’re broken. This depression is not normal. I love you anyway.” I love you anyway is the answer which allows the depressed person stop being strong, and start seeking help. I love you anyway gives the depressed person permission to change instead of demanding a status quo.

As soon as Howard decided that maybe he was willing to see a doctor, I did the research. I found out who we should go to. I made the appointment. I continue to make appointments for him from time to time. Because making an appointment is an act of will. It feels like an admission of illness. Making the appointment is a barrier that can be really hard to clear. I schedule half of the things which end up on Howard’s calendar anyway, so me doing this is a natural extension of what I already do. The frustrating piece was sitting on a waiting list for three months before they would make an appointment. (There’s a shortage of mental health professionals in Utah.) I went with Howard to the first appointment, but not any of the others. Again, this was me helping him over the first hurdle. After that I needed to stay out of the way because Howard has to own this process.

That is the second thing I want you to know: the depressed person has to control their own healing process or it will not work. I suppose it is possible to force someone to take drugs, but that doesn’t make them want to change the way that they’re relating to the depression. Howard had a huge emotional process to go through with taking medication. He had to grieve. I don’t know why daily medication requires grief, but I felt the same thing when I had to begin thyroid medication. It feels like weakness, or failure. It feels unfair. I see lots of friends who take psychoactive medications making snarky comments about the meds that they are on. Howard started taking the medicine and at first he didn’t want to see that it made a difference. Then he could see the difference and was angry at the medicine for working, because it meant he needed it. Slowly Howard is learning the ways that the medicine helps him. He’s learning that it is a useful tool and that it is okay to use all of the available tools in dealing with this.

Naming the depression changed everything. The moment that we looked at Howard’s depression and said “maybe this isn’t normal.” It changed all of our conversations on the subject. We started talking about the depression as if it were a phenomena that could be observed, which it is. We developed a taxonomy of sorts to describe the different variations. Howard directly asked me to be his spotter with the medications because he is very afraid of slipping into abusing medicine. He and I used calm times to discuss how to handle depressed times. I began to pay closer attention to the sorts of things he would say when he was sliding into depression and I learned when gently pressing him to take a pill was the right choice. I don’t have to press as much as I used to do, because Howard has learned to watch his own brain and identify when he needs the medicine. It took lots of practice. I am very much a part of Howard’s management process, but he is the director of it.

Even with excellent treatment there will still be hard days
. Some depressions can be worked through and resolved in a permanent way. We may yet find a way to do that for Howard, for now we still have to manage the down times. The hardest days are the ones where I’m not feeling completely stable myself. I could be ill, under stress, tired, or just feeling a little down. If Howard hits a depressive patch during those days, it feels massively unfair. I find myself angry at him for being depressed, even though I know he would never choose this. There was one day where all manner of little things went wrong, and I was ready to cry. That was the day when two of my kids had emotional meltdowns simultaneously and Howard was having a medium-down sort of day. I lamented to Howard how unfair it is that I never get a turn to fall apart while someone else picks up the pieces.

The “never” part isn’t true, of course. There have been many times when Howard has rescued me and taken care of me. This is one of the reasons the depressive days hit so hard. I depend upon Howard. He handles his things, I handle mine. We’re both full to capacity with things to do, but without warning Howard will be unable to do his things. He’ll feel like he’s never going to be able to do his things again. He’ll say that to me as he’s sorting the thoughts in his head. And the horrible little voice of anxiety will whisper in the back of my head “what if he’s right?” Right now depression shows up and lays him flat for a day or two. But we don’t know why it shows up. We have no way to make it go away. What if some time it doesn’t leave? This is the horrible fear that I lock away in the back of my brain during the hard days. I see the depression and I know it could destroy us, because when Howard is deep into a depressed day, he is different. His thoughts and attitudes are different. His capabilities shift. The Howard I love and depend on is gone and all I can do is wait for him to come back.

So that is a thing you should know too. Depression can be traumatic and terrifying for the loved ones because they are forced to face being powerless. Of course, that one is unlikely to be news to you. But it means that you are at a higher risk for anxiety and depression yourself. Be on the lookout for that. Be aware that you might also need help and treatment. It is possible that the best thing you can do for your loved one is to go see a therapist or spiritual advisor yourself. You need a support network, because this is a hard load to carry. Faith is a huge part of my support network. I have conversations with God about Howard’s depression all the time. I feel like we’re partners in helping take care of this amazing person we both love. I truly believe that any path that Howard walks toward eliminating depression forever will be an inspired walk of faith. I hope that we’re on that path already even though I can’t tell how far we’ve come or how far we have left to go. But if this is a lifetime-long walk, I’m okay with that. I didn’t sign on to be married to Howard just for the easy stuff.

Preserve your own balance. In order not to be pulled into depression myself on the days that Howard is down, I have to actively shield myself against his moods. This is hard, because I am a naturally empathetic person and I am highly attuned to the emotional states of my family members. Sometimes this means that I need to have physical space from Howard when he’s depressed. Sometimes Howard provides that space deliberately in acts of heroism. In recent memory we had a family party on a day when Howard was depressed. It was the first time I’d been able to enjoy the company of my siblings in a very long time. Howard hid himself away, keeping his bleakness contained so that I could enjoy the event. I recognized his sacrifice and told him that I did. The verbal recognition was critical so that he knew that I knew that he was making a special effort for me. Also so that he knew that I was aware of his depression and he was not abandoned with it. It was our way of working together to make sure that the depression did not ruin a party. We hope for future parties where Howard and I can both attend.

Listen without judgment. This is probably the most important function that I serve for Howard when he is depressed. He needs to process and think through what he is feeling. Over the years we’ve learned how to communicate the depression without wallowing in it. It is rare that I’m able to say something that alleviates the depression, but not being left alone with it is a huge help.

Talking about it can help. There is a silence that blankets anything that hints at mental weakness or illness. People are afraid to admit that they’re struggling with mental health issues. Some of those fears are founded in reality. Employers think twice before hiring someone with admitted mental health struggles. People look askance. The stigma is real. But part of what helped convince Howard to get help was when he first started talking about the depression with trusted friends. Part of his ongoing process is to speak up on the internet when he’s having a bad week. The responses to those posts are overwhelming support from others who have walked similar paths and thanks from people who are grateful that someone is willing to speak up. This is the reason I wrote this (very long) post. Because somewhere out there is someone who needs it. And because once I began it, I realized that I needed to say all of it. I’m certain there will be more things to say on a different day, but this is my last thought for you right now. Hang in there. You and your loved one can get through this and find a better place. Howard and I did.

Edited to add: As a result of questions and discussions prompted by this post, I’ve decided to add links to some support organizations which may be useful.

NAMI is the National Alliance on Mental Illness. They have a page dedicated to helping people connect with support groups and discussion groups both online and in person.

Google also led me to DBSA the Depression and Bipolar Support Alliance. They also have a page devoted to helping people connect with the resources that they need.

There is the ASCA, Adult Survivors of Child Abuse. If a history abuse of any kind factors into your loved one’s depression, it is probably best to talk to someone who knows how to thrive after that.

If you want a faith centered approach to healing, you might consider looking at the LDS addiction recovery program. Reading through their 12 steps, most of it applies if you just substitute “depression (or anxiety, or mental illness) for the word addiction. You do not have to be a member of the LDS (mormon) faith to use these services.

I am certain that these are only the beginning of the resources that are available to you both locally and internationally. The world is full of people who understand your pain and would be delighted to help you find a happier way to live.