This one is ragingly long, but it needed to be said. I know my tone has not been as lighthearted lately, and hope that I’m not putting people off too much. I wonder if you guys can tell as much as I can how much of a shift in mood I’ve been stuck with the last couple weeks. It’s been rough. But as I keep telling myself, it is temporary. And hopefully once I go back to eating more normally, I will get back the improvements I had worked so hard for. This is a rant that was begging to be put out there even before this most recent downturn, though.
Very much on my mind lately is the possibility of traveling to a social gathering in Halifax. I would very much like to attend this gathering. The internet is a lovely facilitator of social support and connection formation, but annoyingly inconvenient in that those supports and connections are then scattered across the globe. It would be great to see again the people I met up with previously. It would be great to meet some of the other fantastic people who will be there this time. And it was good for me, when I went before. I came home feeling awesome, for at least a little while.
I was hesitant last time around. I wasn’t sure how I would handle the trip, or the constant social interaction with strangers who may or may not want anything to do with me, or how I would be feeling physically or emotionally by the time the big weekend rolled around. I felt exposed leaving my support network behind. I am an independent and capable lady when I need to be, but I’m not generally the travel by myself type. But I knew that it would be an experience. And one worth having.
I am not worried this time (so much). I know that I will handle whatever challenges my body happens to be throwing at me at that time. I know that I will be happy to be surrounded by the people there, and that being in a supportive, low-stress environment is likely to make the physical and emotional roller coaster easier to deal with for at least the few days that I’m there. I may be very tired by the end of it, but I can rest up when I get home. It would be well worth it.
I cannot afford to go, financially speaking. But I have come to terms with that, and I am very tempted to try to work around it somehow anyway.
My therapist thinks it is a great idea. She is strongly of the opinion that it would be good for my health, and I am inclined to agree with her. Social interaction is good for people with depression (and it takes a lot of willpower to keep that going when things get bad). Removing the pressure and expectations on myself for a while is a great thing for my recovery. It is a good thing to grab onto every scrap of happiness and joy I can get my hands on these days and milk it for all it’s worth. New experiences and new scenery support the release of dopamine. Bonding conversation (and snuggles!) release oxytocin. These are feel good chemicals. Being a little adventurous is good for self-esteem and overcoming anxieties.
All in all, it should be a great thing for me.
Evidence suggests that my insurance company might disagree.
When my doctor pulled me from work due to the level of my depression, the insurance company sent me a pile of forms to fill out, read through, etc (which is really a terrible thing for somebody overwhelmed by daily life enough that they are unable to work, but that’s another long-winded rant all together). Part of that paperwork is a little statement on one page that says that at any time, they have the right to put you under surveillance, and to gather information about you for the purpose of assessing your ability to work.
Let me first say that when one is dealing with stress and anxiety, and financially dependent on those payments, that is a terrible statement to have to deal with. My psychologist suggested I take a walk. Are they going to see that I’m walking and think that means I’m okay? My psychologist suggested I spend as much time with friends as possible. Are they going to twist that? My psychologist suggested I try to find anything that could make me smile or laugh, even a little, and try to play the part of a happier person even when the emotion didn’t reach all the way down. But what would happen if that was the moment that they happened to see?
Because they really do put people under surveillance. Several members of the support group I went to were investigated that way when they were receiving benefits. My psychologist knew lots of patients who were too, and my psychiatrist has a ton of horror stories of people whose actions were taken out of context by insurance companies who got their hands on information or photographs. Not friend of a friend stuff, or even one or two cases in the news, but actual people connected to me by only 1 or 2 degrees of separation. And lots of them. That’s not to say that I’m sure I’d be monitored, but the possibility does actually exist.
It has become a running joke for my husband and I now. Whenever we say or do something particularly strange, or have one of those weird and totally random conversations we tend to have, or end up making animal noises, or make a statement that would be hilarious taken out of context, we give a little laugh and say that we hope “they” are listening right then. I try to laugh it off.
But the truth is, I get a little nervous on some level every time that I smile. I get worried every time I have a better hour, or a better day, or a pretty good week. I feel relieved when things seem to be improving, but I also get just a little bit scared.
What would the insurance company think right now if they saw that I was able to post here? What would they say if they knew that my husband made me laugh tonight? That he often does? That at this point in my recovery I find sincere enjoyment in his company, or the company of our friends. That sometimes now I can make appointments, or do my laundry, or run errands? That I would not classify myself as a “sad person” no matter how hard things get?
What would they think watching me interact with people, keeping a normal face on things, sometimes smiling, and laughing, and making jokes?
That I must be fine to go back to working, right? That if I just worked harder, I could be doing more? I might think that myself looking in on just a snapshot of the situation. Sometimes I do.
And yet, I know when I start doubting myself to pull up realistic evidence. I know that conclusion is wrong. So does my therapist. Except she doesn’t doubt it like I do, because I’m hard on myself like that.
I went to a doctor’s appointment today. I fed my cat. I researched online. I posted this. I even made dinner. And my husband made me laugh or smile. More than once.
But I also cried significantly three separate times today. This afternoon, I was sitting on the floor of my living room, feeling trapped, and lost, and saying over and over to myself that this emotional struggle is temporary, and that it will eventually go away, and that I will eventually get better. Because I didn’t feel like I could cope. I have been too tired to shower for a length of time that I do not want to admit to. And last week I tried committing to making us dinner every night for a week, and by the third day I broke down in tears and my husband had to take over, because I simply could not handle it.
I am getting better. But I am not well.
Yes. In the right circumstances, I can have a pleasant outing. And if they wanted me to come into work for two days every month, but with no stress, and no pressure, and no expectations, and surrounded by supportive and accepting people, doing pleasant things, and with the rest of the time to gear myself up for it and then recover afterwards, I could probably handle that too. I could keep a good face on things, and I could probably smile sincerely, and unless it was a particularly bad day or week, people might never know what kind of problems I have had.
But that is not what my job entails.
And while I am relieved and proud that feeding my cat is no longer a daily struggle, it is probably telling that a half hour of daily cooking is still far, far too much for me to handle. Sometimes I can cook, if there is no pressure on me to do so. But that isn’t the same thing as being able to commit to it as a daily chore. When things are going smoothly and without pressure, right now I am doing really well. I often even feel “normal,” even if I admittedly I don’t yet have more than about an hour of productive time each day. But as soon as something goes awry in even a little way, or there is an obligation on me to perform, I begin to break down. Sometimes in ways that I can hold together with effort. Many times in ways that want to swallow me whole.
I would drown if I tried to go to work. Probably before the end of an hour. Definitely before the end of the week. Just the knowledge that I HAD to go day after day would be a huge strain on me right now. I need a lot of recovery time for my “busy” days. I think I’m doing great on a day to day basis, given how low I was a year or two ago. My overall quality of life is improving in some ways, and I am starting to pick up the various pieces of the rest of my health and try to figure out how to put them back together. But realistically I am nowhere near being able to work regularly as things stand right now.
And not for lack of trying.
I am a tryer.
If I am good at anything at all in this world, it is trying hard.
So when I find out that the insurance company is now doing a more intense review of my case file (which they are), or that in addition to the reports he had sent them they have now asked my psychiatrist to forward to them copies of every written note he has ever taking on me (which they did), and I realize that if they thought they could make a case for ending my benefits then even if my therapist and psychiatrist and family doctor were in agreement that I was not yet well that they could cut me off anyway and leave me to fight a legal battle if I disagreed (which they could), and that they have no actual interest in getting me better except because then they wouldn’t have to pay me, and when the experts around me start telling me how very motivated those companies can be in terms of trying to find any excuse to send somebody back, I begin to get nervous.
And I begin to doubt things like trips to Halifax.
When I was first diagnosed, my psychologist at the time told me to try to relax and do things that would be good for my health, but “whatever you do, don’t take a vacation.” She said that every time she got called up by an insurance company, they would ask if the patient had taken any vacations. Stupid, but true. And there are stories in the media that would suggest the experiences she was privy too are not entirely unique. I can SO easily see how that could have happened to the woman in that news article. And so easily see how someone who had never been in that state could have assumed she must be okay. Some days are better days. Some days are not. It’s the proportion that determines overall health. Something similar happened to a patient of my psychiatrist. She was a teacher, like me. The psychiatrist said she was still ill, but the insurance company didn’t buy it and told her she had no choice but to return to work. She killed herself.
As much as it might seem from the outside like someone would want to fake it, I have never found anyone who wanted to appear more depressed than they were. We spend our whole lives trying to appear as much as possible like everything’s okay. We learn to fake it, and to cover, and to pretend to be just fine, so that hopefully nobody will find out what’s really beneath the surface. We refine this skill with unparalleled focus and drive. Even when I was having frequent visions of death, the people I interacted with would never have known unless I told them. It just meant that when I could no longer hold it together, I would cheerfully excuse myself to the bathroom to cry. Having depression is an awful way to live. And it is humiliating. And carries a stigma. If I was going to fake a sick day from work, I would find a better excuse than raging chlamydia.
It makes me SO mad that they can get away with disregarding the opinion of the doctors involved. If they want to take pictures or collect information that’s fine. Send it to the person’s psychiatrist. Let them make that call.
I really wish there was a blood test for what’s wrong with me. So that they could talk to my doctor and get some lab results, and then everyone would know how I was doing in black and white terms. I wish there was. But there isn’t.
And somewhere in the process of getting better enough to return to work, I am probably going to need to smile. And leave the house. And handle tasks, little by little. But being able to demonstrate that I can jog for five minutes does not make me capable of completing a marathon.
And beyond trusting the assessment of the medical professionals working with me (which I have been told flat out by those medical professionals that they will not), I don’t know how the insurance people would distinguish accurately how well I am along that spectrum. And I don’t know what I can do to continue with my recovery without setting off warning bells for the company providing my long term disability benefits, or any private investigator they might choose to employ. And we would be really, really screwed without my income for even a few months. Even if we cut back everything possible, we could not live on just my husband’s salary and credit cards for long while battling a faulty decision in court.
And that scares me.
I am trying very hard to push myself to do the things that I am capable of, and to take on as much as I can manage (and, more so, to learn how to push myself less and learn to add the caveat of “as much as I can manage…without damage“). I don’t want to deprive myself of experiences that would be beneficial just because they’ve been foolishly tagged as indicators that can be used to try to prove someone is well. And I do not want to stifle my recovery to avoid the appearance of health. That would be a ridiculous thing to have to do. A stupid, twisted, symptom of a broken system.
But I am not certain that it isn’t also a wise course of action.
Tags: disability benefits cancelled because of pictures on Facebook, hiding symptoms of depression, insurance company surveillance, long term disability insurance, sick leave for depression, smiling and laughing and worried about losing insurance covereage, this is apparently very commonly a huge source of stress for people receiving benefits. I am not surprised, will my insurance company really put me under surveillance