Most Likely to Take Over the World

1. The illness I live with is:
Treatment-resistant Depression

2. I was diagnosed with it in the year:
2009 (officially, but I’ve known for years and was first treated in 2002 for what was thought to be anxiety disorder)

3. But I had symptoms since:
I was 12 or 13 years old.

4. The biggest adjustment I’ve had to make is:
I don’t really know how to answer this question, since I’ve lived like this for almost half of my life. The only real difference between then and now is that I have a label and that I can seek treatment.

5. Most people assume:
That I’m just lazy, mean, or aloof. When I was in high school, some teachers branded me as “bashful” while others said I was a “know-it-all” because I’d lash out at classmates when they irritated me — usually because of ignorance about something I thought they should be aware of. My whole life, I’ve heard people say that I’m so smart, so clever, that I could really make something of myself if I just *applied* myself. As though I’m some lazy cow that doesn’t want to do anything but lay around in bed, sometimes for days at a time.

6. The hardest part about mornings are:
When I’m unmedicated, the hardest part of the morning is getting out of bed, when I just can’t do it. I tend to curse — mutter “fuck” — a lot. I also walk around a bit zombified first thing in the morning and will bite your head off if you don’t leave me alone until I’m ready to interact with you – because it takes a lot of energy for me to interact with people, and when I’m depressed I’m usually not sleeping at night, so I’m tired and very low on energy. So please, do not come to me, wait for me to come to you in the AM. (I should again note that this is only when I’m unmedicated. On medicine, I’m doing better. But I worry, because no SSRI has ever worked for me — only coupled with an antipsychotic have SSRIs worked, which is an off-label usage. More about that later.)

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is:
Anything internet connected. I was a very sad, suicidal, lonely person until I began online journaling in 1996/1997 and found out there were others in the world like me. Before that, I thought depression was just being sad all the time, so the irritabiity, the inability to sleep, the feelings of being completely detatched from the world — none of that fit the socially-accepted idea of depression, so I just thought I was crazy, and lazy, and fucked in the head.

9. The hardest part about nights are:
Getting to sleep. When I’m unmedicated, it takes hours for me to stop the ruminating thoughts and get to sleep. Sometimes, I have to tell a story in my head — plan out the storyline of the comic I write, www.raincannon.com, for example — in order to stop the nagging, self-depricating thoughts.

10. Each day I take 8 pills & vitamins.

11. Regarding alternative treatments I:
have never found them to work, not even just straight therapy. My brain is wired wrong, the chemicals are fucked. If I wasn’t such a wimp, I’d be out with Anonymous protesting Scientology whenever possible because their ideas about depression are just WRONG and can do SO MUCH HARM!

12. If I had to choose between an invisible illness or visible I would choose:
I don’t think, as I don’t have normal thinking patterns, that I can answer that.

13. Regarding working and career:
I lie at work; I tell them that my blood sugar is low (it’s slightly low, but nothing serious) to explain the exhaustion, the doctor’s appointments, the medications I take, and calling out sick. I’ve had migraines a couple of times in my life as well, so I often use that as excuse for the days when I can’t get out of bed because I’m too depressed. I don’t think I’m the only one. There are two women on my work on FMLA — one for Irritable Bowel Syndrome (supposedly) and one for “headaches”. While I know they both do suffer from the conditions they do, both have mentioned — off-hand — that they have issues with depression. They say it’s because of their IBS or their headaches that they’re depressed, but considering I blame my moods on exaggerated physical symptoms, I can’t help but wonder if they are too, because no one talks about these sorts of things. Hell, one woman in my office lost her spouse many years ago, but I only found out recently that her bi-weekly “doctors appointments” aren’t related to other ailments she has, but are appointments to see a “grief counselor.” She also tends toward irritability, like me, but like the others in my office, no one uses the D word. It’s IBS, headaches, hypoglycemia, or grief. It’s never depression. Because that either means you’re crazy or you’re just sad and need to snap out of it. And no one wants to hear that.

I once almost got fired because of my depression when I worked retail. I called out for five straight days in a row, because I couldn’t get out of bed. I have asthma, so I just kept saying “it’s my asthma. I can’t breathe!” I thought about going to the hospital, just for the doctor’s note, but I was scared of being committed — being committed or held against my will or unable to control myself is one of my greatest fears in life — so I didn’t go. The next shift, I went to work, but left because my ex-boyfriend (it was a recent break up) called to say he’d slit his wrists and was going to bleed out in my apartment. When I returned to work after taking him to the hospital (where he was committed for 14 days) my boss just assumed that I was being abused and that’s why I hadn’t been to work. I didn’t correct her. Several months later, I freaked out on a customer and an employee (I was a manager), and the irritability was so bad, I burst into tears, threw everyone out of the store, pulled the gate, locked up, and threw the keys under the gate. I guess, at that point, they realized it wasn’t just the ex-boyfriend that’d been the problem.

14. People would be surprised to know:
that just because I’m depressed doesn’t mean I cry all the time or constantly feel sad. My depression manifests mostly as irritability and anger, both outward and inward. Mostly, it manifests in constant rumination — over things I could and couldn’t control, events either recent or in the long distant past.
Sometimes, I can’t sleep at night – in fact, in contrast to popular belief, I sleep very little when I’m depressed. Because the ruminations do not stop, I have trouble falling asleep at night – I have to tell myself a story, visualizing it in my head, to stop the nagging. I often get up in the middle of the night and stay awake for hours, once again trying to tell myself a story (usually plotting out the webcomic I write) to stop the rumination.
I tend to feel a disproportionate guilt to the situation, which is what I ruminate over all day. For example, one day in June, I left my daily cup of coffee on the table as I was running out the door. Now, most people would realize this at some point, go “Ah shit, I forgot my coffee,” stop at Starbucks/Dunkin’ Donuts/WaWa/etc., for a new cup, and not think about it again, but all day, it just bothered me. My husband makes my coffee every morning, exactly the way I like it. He gets up when I do, even though he doesn’t leave for work until 40 minutes after me, to make it. “I’m so stupid. I let him down. He puts so much love in that coffee, he’s going to think I don’t love him! Why am I such an idiot! I can’t believe I’ve hurt my husband like that!” played in my head all day long. When I got home, I ran into the living room, grabbed the coffee, and gulped it down in front of David, who just looked at me perplexed. “I’ve been so down all day because I didn’t have my perfect cup of coffee!” I said and didn’t stop gushing for the rest of the night about how thankful I was that he makes coffee for me every day – even though, in later conversations, he told me he didn’t even notice I’d left the coffee at home, and if I’d said anything, it wouldn’t have been a big deal. But even that night – and for days afterwards – I couldn’t help feeling like a terrible wife for forgetting my coffee.

It’s not just things that happen during the day, either – there are memories from as far back as when I was five-years-old that sometimes just crop up and plague me. When I was in preschool, I won second place in a teddy bear pageant (cheesy, right?) – the prize was a $10 gift certificate to a local ice cream parlor. My grandfather accompanied me one day when he was off work, and when the waitress asked what kind of ice cream we wanted I said I’d have a cup of cookies and cream (my favorite) and my grandfather said he’d have a cup of coffee.

Well, the waitress brought him a cup of black coffee – not a cup of coffee ice cream, which they didn’t have, despite listing it on the board as the flavor of the day. She took it back and brought him Butter Pecan instead, but tried to charge him for the coffee anyway.

I cannot begin to explain why – when I’m not medicated – that story and others like it, where there was nothing I could have done to stop an embarrassing human error – brings me to tears, but it does. It bothers me, that waitress still irritates me, and I still hold a grudge against that shop and have never returned because of that incident almost 25 years ago.

15. The hardest thing to accept about my new reality has been:
That I’m not always going to be well – that there’s a very real chance that I will be unwell again.

You see, the problem with treatment-resistant depression is that it does not respond well to SSRIs. In 2002, I went to a doctor (only because I needed a note for work because I’d missed 3 days due to the fact I couldn’t get out of bed) and was diagnosed with anxiety disorder. Apparently, the doctor also was under the impression that depression is sadness and rumination, guilt, and low-energy was generalized anxiety. Whatever. Point is, she put me on Paxil, which has a history of causing certain people (bipolar people and those with treatment-resistant depression such as myself) to go manic, which is what happened to me. I began feeling delirious, impervious to failure, and pretty much just high. I married someone I barely knew because I thought it was going to be the greatest marriage ever, and I was going to be the greatest wife ever, and we’d conquer the world because I was so kick-ass and awesome. Then, when the marriage started falling apart, I went back to an ex-boyfriend because this time was going to be different, I was on awesome medication which made me awesome, and all the problems that had existed in the relationship prior would be gone because they were all my fault, but now they weren’t going to exist any more because I was perfect and awesome now!

Etc.

Obviously, that didn’t work out very well, and I ended up alone and divorced.

When I went to my GP complaining of these issues, he gave me an increased dosage of Paxil and said if it didn’t work, we could try Zoloft. Instead, I took myself off and never looked back. On Paxil, I’d gained 25 lbs and gone absolutely, off-my-rocker insane and never wanted to go back.

This year, the depression finally intensified to the point that it was in 2002, so I went to a new psychiatrist who put me on Celexa. When there was no response, he signed me up for a drug trial for a dopamine antagonist currently used to treat lithium-resistant bipolar patients and schizophrenics. Two months later, and most of the symptoms of my depression are almost completely gone without me feeling high or euphoric.

The problem is, like most antipsychotic medications – especially dopamine antagonists – there’s the risk of tardive dyskinesia. If you’ve ever known a schizophrenic or anyone else on antipsychotic medication, you’ve probably seen one of the most common manifestations of tardive dyskinesia – the tongue flickering. At random intervals throughout the day – sometimes continuously – someone being treated with Haldol, Risperdol, Zyprexa, or thorazine will open their mouths and their tongue will roll out, like someone unrolling a yoga mat or prayer rug, and then just hang there, flickering, as if searching for some scent. Other manifestations include twitching, shivering, facial spasms (sucking and lip smacking), and fingers twitching as if the patient was playing an invisible guitar.

It’s estimated that for every year on an antipsychotic medication, one’s risk of tardive dyskinesia increases by 3-5%. If this is the only thing that helps me, in the next 20 years, I could end up being unable to control my body.

And that’s assuming that this drug, currently in phase II testing for treatment-resistant depression, is approved by the FDA.

Either way, as soon as the study is over, the only drug that’s ever worked for me will be pulled back from use,  and I will have to endure that trial and error system of finding something that works as well as the experimental drug – assuming there is anything. Hurray for the imprecision of psychiatric medicine. But, of course, if it is approved, I’m going to have to choose between successfully managing my depression and uncontrollable ticks that will allow people to mock me and will lead to so many people finding me disgusting.

That’s the hardest part.

16. Something I never thought I could do with my illness that I did was:
Graduate from university.

17. The commercials about my illness:
Piss me off to no end, especially for things like Abilify, which treats bipolar disorder and (supposedly) treatment-resistant depression. If you haven’t seen it, it’s someone who’s all moody, walking around a dimly-lit shore-area property, being sad and moody and depressed, without any friends or companions. Then, there’s Abilify, and suddenly it’s a sunny beach and she has a man, and they can walk and laugh and be real people.

Gag.

It pisses me off so much that drug companies market antidepressants and mood stabilizers as drugs that will help lift your mood and improve your life, the kind of thing you need if you’re feeling blue, like how you should get some Botox if you’re feeling old. You know, even as cute as the little Zoloft sad/happy stone was (and he was freakin’ adorable) those ads still bother me as well. Oh, are you sad? Take happy pills!

Look, depression isn’t about being sad – it’s about a complete lack of energy or will to do anything, no matter how much it bothers you. For most of my life, I was considered lazy and rude horrible because I didn’t ever tidy my room, I didn’t shower daily, I rarely brushed my teeth. Truth was, for more than a decade, the choice was functioning in the real world or being clean and well-groomed and staying indoors, away from people, because with depression, you only have a finite amount of energy – if you waste it all getting up at 5:30 AM to get a shower, blow dry and style your hair, brush your teeth, make and eat breakfast, get dressed in a stylish outfit, and put on make-up, you’re not going to be able to make it through the rest of the day. For years, I kept my hair short, my clothes all black, and skipped breakfast – not because of some deep desire to express my inner anguish, but because if my wardrobe was all black, I wouldn’t need to think about what to wear. (Going to Catholic school made it even easier.) I could roll out of bed, grab anything from my closet, then decide if I was going to shower or brush my teeth – short hair pretty much styles itself. Then, after school, I could worry about doing homework verses brushing my teeth or showering, whichever I didn’t do in the AM. Listerine strips were the greatest invention known to man, because then I could just pop one of those in as well.

High school saw not only the invention of Listerine strips and pocket, disposable toothbrushes (hurray!) but also my entrance into Catholic school, which meant uniforms (even less thinking involved!) and a best friend who’d buy me lunch in the morning (bagels and Surge! Remember Surge?! I miss that drink so much) and sit with me while I ate. Just having less to do and someone to help me do it was absolutely essential to getting through my day.

Of course, that’s not how Big Pharma’s commercials depict depression. You’re just sad, not funky and gross! Just sad, and they have happy pills for you.

Fuck you, Big Pharma. Fuck you.

18. Something I really miss doing since I was diagnosed is:
Being able to go out all night and not worry about missing my medication time, as I have to take my meds at the same time every night, and people tend to get creeped out by a 28 year old pulling out a travel pill container and dumping 5 pills into her hand.

19. It was really hard to have to give up:
Drinking. On dopamine antagonists, you cannot drink heavily, which was one of my favorite things ever.

20. A new hobby I have taken up since my diagnosis is:
Playing Wii Fit every night. Something else you probably don’t know about depression is that SSRIs have a nasty habit of causing weight gain, as do antipsychotics. People on Zyprexa, for example, can gain 20lbs in a month! So, because of the SSRIs *and* dopamine antagonist, I have to watch my weight. I take Alli, don’t eat more than 1500 calories a day, and exercise at least 30 minutes every day. So far, no weight gain, which is amazing.

21. If I could have one day of feeling normal again I would:
I don’t know what it feels like to be normal; the question doesn’t make sense to me.

22. My illness has taught me:
a lot about how people do not understand mental disorders/illness. For so long, my inability to do things was called “lazy” or “spoiled” and my irritability was called “bitchiness,” or “entitlement” that I really thought the worst about myself. Now, I see how wrong I was about myself, how wrong others (even my own family, who thought I was lazy) was wrong about me. I also have learned not to judge other people who do weird shit – for years, I worked with a woman who’d shuffle around, her tongue just randomly rolling out of her head, talking about Hitler being her grandfather and a judge stapling her eyes shut. She’d also make faces at me. I knew she was schizophrenic, but I didn’t realize that the tongue thing and the chewing with her mouth wide open, making smacking sounds, and staring down people was all a part of the TREATMENT for her disorder; I just thought it was her disorder. Now, I know better and I feel really bad for always wondering how she got through school, how she went on dates, etc. It’s because her Rispordol made her fat, made her tongue roll out, made her smack her lips and stare through people. She was normal until a disease took hold, and the treatment might have saved her mind, but it destroyed her body and isn’t her fault.

23. Want to know a secret? One thing people say that gets under my skin is:
“Oh my God, that person’s so bipolar!” because someone flips out on another person. For years, I thought I might be bipolar (and was ashamed) because I’m so irritable. Irritability and losing one’s temper are symptoms of many disorders; it doesn’t make you “crazy” or have multiple/split personalities.

The other thing that really gets under my skin is when men say to me “Smile, sweetheart.” Fuck you. You don’t know what this feels like, don’t tell me to smile like I should have to be happy all the time — and when was the last time you said that to a man, hmm? You wouldn’t tell one of your buddies to smile if he was wearing a blank or pained expression, so why is it okay to tell me to smile? I know you probably don’t mean to be sexist, but it is. I know you don’t mean to sound insensitive, but it really is because I can’t just snap out of it and smile. Some day, you will say this to me, and I will smack you in the face. You’ve been warned.

24. But I love it when people:
Notice when I’m feeling down and treat me with kid gloves, giving me space but at the same time letting me know that they notice I’m not feeling well, and if there’s anything they can do to help, they’re there for me. I’ll probably never ask for help – I’m too headstrong for that – but just knowing someone cares is worth a lot to me.

25. My favorite motto, scripture, quote that gets me through tough times is:
I don’t have anything that gets me through tough times, but I have a favorite quote about my disorder:

“I felt very still and very empty, the way that the eye of a tornado must feel, moving dully along in the middle of the surrounding hullabaloo.”

26. When someone is diagnosed I’d like to tell them:
“This isn’t the end. This isn’t the beginning of the end. It’s the end of the beginning. Your whole life is going to change from this point forward – you’re going to feel better.”

27. Something that has surprised me about living with an illness is:
Just how intolerant of mental illness people are, how everyone thinks that it’s your fault and you should just snap out of it. That I have to keep this a secret because I could face, essentially, discrimination at work because of my illness (If I call out for migraines, it’s understood; calling out because you’re too depressed to get out of bed is laziness) really surprises and bothers me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
My (current) husband will make dinner or just sit there and let me cry about everything that’s hurting me and not judge.

29. I’m involved with Invisible Illness Week because:
I want to put a face on the other symptoms of depression, to show that it’s not just feeling sad.

30. The fact that you read this list makes me feel:
Scared, because I know that your entire perception of me will change as of this moment, and I’m fearful that it will be negative from here on out.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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