Back From the Conference
Well, I’m back from the State NAMI Conference and, though I’m still processing the whole experience, it’s a mountain I’m really glad I decided to climb, as I am now infinitely more confident that I can attend events like it in the future without facing an inevitable psychological crisis. I made it through, I stayed “safe” (I didn’t take too many benzos or injure myself), I made some important contacts, and I even looked halfway decent in my Halloween costume if I may say so myself. All things considered, it was a very beneficial- if utterly draining- experience.
First of all, Fate- God/dess, the Cosmos, whatever- intervened at the last minute so that I didn’t have to visit the State Hospital after all (although I think the fact that this conference was important enough to me that I was even willing to do so counts for a lot). Instead I got to attend the SAA Summit, which was a much better fit for where I am in my advocacy efforts, anyway.
What’s an SAA Summit? Well, in Montana each county has it’s own “Local Advisory Council” (LAC) made up of mental health and co-occurring clients, providers, and- hopefully- public officials and representatives of law enforcement who brainstorm about public policy and try to improve the level of care in their community. Each LAC sends one or two representatives (a position for which I was recently elected) to its regional “Service Area Authority” (SAA), which, in turn, sends one or two representatives to the statewide SAA Summit, where the fate of bills related to mental health care are ultimately decided.
Attending the summit was equally interesting and irritating- interesting because it was a higher tier in the legislative process; irritating because the SAA’s have been trying to move the same damned bills forward for years and have somehow never succeeded. Finally the moderator basically told each SAA to pick one issue, go home and draft a bill that moved and even made some kind of sense to the voting public, and come back in a few months with something the Legislature could actually use.
She also cautioned the people at the table not to divert funding to community services to the extent that the State Hospital suffers, which of course is exactly what I’ve been saying for three years, but this brought the ire of some (which, in turn, set my teeth on edge) who insisted that the state will always provide for the hospital and (effectively) that we should just let the census overflow again to prove to the Governor that advocates have been right about the need for community services all along (never mind all the people who would have to die or be permanently traumatized in order to prove that point, or the fact that the only reason the census at Warm Springs is down is because Montana’s criminal justice system has received a sharp increase in funding and many of the would-be patients have simply been diverted to jail). Sigh.
The conference was far more encouraging. The Shut Up Sisters were outstanding, and were able to captivate my attention to the point I forgot how long I was sitting in an extremely crowded room, which is not an easy feat (although it probably bears mentioning that I learned from the last conference I attended to sit in an aisle seat or not sit at all. Those narrow chairs pushed seamlessly together cram me more tightly between two people than I could ever stand to be, which was probably what triggered my crisis the last time. More on that later.) To anyone who hasn’t heard of them, these are two sisters- one of whom has a daughter with bipolar disorder and one who has a daughter with Asperger’s Syndrome- who co-authored a book titled: Shut Up About Your Perfect Kid about their experiences raising children with disabilities. Although I’m sure some people coming from a neurotypical* mindset and even some persons with disabilities would be offended by their humor, it was obvious to me by the way they described their initial revelations about their daughters’ respective illnesses that their ability to manage their terror and pain with levity was sincere.
Montana’s own Wendy Parciak, author of Requiem for Locusts (how freakin’ cool is that title!) was equally compelling in a different way. She gave a presentation called “Writing your way towards sanity: A sibling’s tale” about how she was able to translate her sister’s battle with profound psychosis as the result of a genetic disorder called Velocardiofacial Syndrome (VCFS) into a novel that was both engaging and truthful.
The NAMI In Our Own Voice presentation was very… well… NAMI, but I’m still willing to give it a try. It will be interesting to see if I can compress and sanitize my “voice” enough to effectively participate in the program, but looking back over my previous blog entries I would say I’ve made significant progress. (Oh, I’m still angry! I always will be. But I’m on just the right medication and I’m just jaded enough to channel that anger effectively, without getting so incensed when I think I’m being ignored or belittled, or when policies I’ve championed die on the table.) The next IOOV training seminar is scheduled for next spring, so I guess I’ll find out then if it’s a good fit.
I got to visit my friend C.M. (the advocate who investigated my complaints against the hospital last year) and though we didn’t get to talk about Warm Springs as much as either of us would have liked, I must say there are very few people who can read the explicit details of your stay, and your experience of sexual violence, at a mental hospital and still make you feel comfortable enough to chat like old friends; and he’s just that kind of person. I also struck up a conversation with a member of the Montana Coalition Against Domestic and Sexual Violence and discovered a clerical error was indeed responsible for the fact that I’ve never heard back from the organization since I joined it several months ago. (I thought paying a membership fee and not even being signed up for so much as an email newsletter was a bit peculiar!) So hopefully the next time there’s a MCADSV conference I will know about it in time to actually attend it!
I also got a huge wad of literature to read from various booths, and a few things to Google when I get around to it. On the way home I also had some very interesting discussions with a co-occurring counselor I know from the LAC. At one point she asked me if I planned to go back to work, and for the first time (still feeling optimistic from the conference, I suppose) I just flat out said, “If I do, that’s fine, but not if it interferes with my ability to do things like this. It may be controversial, but if SSDI covers my expenses so I can be a full time advocate I think it’s worth it.” Without hesitation she said, “I think that’s a good use of my tax dollars.” It was a refreshingly supportive statement, especially with my psych nurse riding my ass these past few months. Being a high functioning person with mental illness is a double-edged sword, and reactions run the gamut from, “You have such insight into your illness and so much to offer,” to, “You’re obviously doing just fine; get a job.”
Unfortunately, the conversation took a nosedive when the subject of religion came up (but what conversation doesn’t?) She asked me if I still have faith even though I’m no longer going to church. I choked and told her I was “agnostic,” although in retrospect I think “spiritual” would have been more accurate. It’s probably a moot point, anyway, because one is bound to evoke the same reaction as the other.
In all honesty I’ve struggled for quite a while with how to label myself. I can always find something with which I disagree about a religion, which makes it impossible for me to fully claim any particular religious identity. (Which is, incidentally, fairly typical of borderline personality disorder.) Recently I happened across the term “Goddessian” to denote women’s spirituality, which seems more like where I truly am in my spiritual journey, and is a broad umbrella term I could live with as long as no one tries to institutionalize it. (One can only hope.)
The only time I really felt like I was losing control was when I was at the banquet on Thursday evening. The more it dragged on, not only did I get really bored, but I also realized how much I had actually blacked out the last time I attended the State Conference. That was by far the worst disassociative experience I’ve ever had. I have one flash of sitting at the banquet table and another flash of going to the restroom, and the next thing I remember I was home… the next day. What the hell happened in that amount of time? I know I somehow got to my room, went to sleep, woke up, got dressed, attended the rest of the conference, and- this is the really disturbing thing- drove myself home afterward. But I’m curious: did anyone notice? Did I go on speaking and acting normally? I assume so; since no one commented afterward that I seemed really “out of it,” but the more I obsessed over the idea this time, the more it began to trouble me that I couldn’t retrace any of my steps. However, I managed to avoid any self-fulfilling prophecy and by Friday morning I realized I was going to make it through the entire conference. All things considered, it was a few days very well spent.
*I recently encountered the term “neurotypical” (as opposed to “normal”) on Feminists With Disabilities and fell in love with it instantly. (I’ve also kind of been mulling over the term “psychologically privileged,” though I don’t know if anyone has coined it yet.) If there’s one thing I’ve learned from the Internet it’s that you can always count on feminist bloggers to stay on top of the latest politically correct/person-first language.
You Gotta Be Kidding Me!
I will be attending Montana’s State NAMI Conference this Wednesday through Friday. This is nerve wracking enough, but last week I found out that after a couple providers offered me a ride, and I made my plans accordingly, suddenly they remembered they had some kind of work to do at the hospital on Wednesday, and that I will have to hang out there for a few hours if I still want to get a ride with them. (My own car is somewhat less than road trip worthy.) Just to be clear, I mean THAT hospital- Montana State Hospital- the last place on Earth I ever wanted to be again! I’m sure I will have plenty to write about it afterward!
Very few people who get out stay out, so it is highly likely I will encounter some people I know there. The truly sad thing is that I am less concerned about seeing the people who hurt me as I am worried about seeing my friends. I don’t know if my heart can take it if I see one more person I once loved has turned into someone I no longer recognize, or was never that person to begin with, or has never even thought of me once since I was discharged three years ago. So far all my attempts to maintain contact with former patients have led to some kind of catastrophic loss of faith. One stole all my money and got arrested for dealing my meds; one asked me to “forget” a bottle of my medication at her house so she could commit suicide; and one broke my heart without even the courtesy of a goodbye. Yet no matter how many times I get kicked in the teeth I never seem to learn which doors are better left closed. We are not supposed to remain in contact with each other for just such reasons, which means the hospital staff is actually right about something, and that just pisses me off.
What Does “Bipolar” Look Like?
Invisible Illness Awareness Week has come and gone, but the battle still rages in my own life. I’ve been seeing a psychiatric nurse practitioner for a few months now (there is a major shortage of psychiatrists in MT so most of us end up seeing general practitioners or nurse practitioners to get our psych meds adjusted) and though at first I appreciated her candor, now I just find her opinions to be presumptuous and condescending, to put it nicely.
It’s been fair enough for her to say I haven’t challenged myself enough lately. It’s probably true. Though I’ve experienced a lot of internal growth in the past year I have taken very few social risks, so in that respect I will concede she is correct. However, the more she tries to hammer that nail into my head the more the subtext seems to be that I am not sick at all, and the more I revisit our past appointments the more it grates on my nerves.
Basically she took one look at me the first time we met and decided I’m not really disabled (as in legally). Frankly I don’t think she even believes I’m bipolar. She didn’t even want to hear what my diagnoses were when I told her my psychiatric history (which should have been a huge red flag in retrospect) and she insists I’m just unconsciously sabotaging myself because I want to be on disability. In fact, her exact words during that first appointment were: “How much of staying sick was you not wanting to go back to your job?”
“Staying sick.” Like it was a choice. It’s the kind of ignorant bullshit I generally expect from the average person but not from a mental health professional (although it certainly wouldn’t be the first time).
When I tried to tell her how traumatic my experience at the hospital was, and that I spent at least a year recovering from my so-called “treatment” before I could even begin to regain my mental health… let’s just say I can sense when someone doesn’t believe me, and I’ve met my share of mental health professionals who think I’m making things up. She finally tap-danced on my last nerve on Wednesday when she fed me the “the patients I see can’t even function” line, which would imply I am either not really bipolar or not bipolar enough.
After our last appointment she asked me if I wanted to schedule an hour next time so we could “talk more.” I told her a half hour was fine but what I really felt like saying was that a half hour of listening to her ableist crap was more than enough. I already have a psychologist and if he doesn’t think I can go back to work it should be none of her business. Her job is to adjust my medication and nothing more, and if people who are competent at prescribing psych meds weren’t so few and far between in this state I wouldn’t come back to see her at all.
I certainly won’t deny that I rank somewhere in the “high functioning” category, and I know I come across as being far less ill than I am. I’m young and physically healthy, and I speak well. I have a nice social gloss. I’ve also had 16 years to learn how to hide my symptoms so I can blend in with the general public. Most persons with mental illness wear a mask to the outside world if and when they can; so I understand why people in general don’t think I “look” bipolar- whatever that means- but I guess I expect those who have been specifically trained to diagnose and treat mental illness to see past the façade. I’m weird that way.
There’s also a bigger picture here. I think this woman not only presumes too much about her role in my treatment but she has a very myopic view of what it would take for me to be successful and fulfilled in my life. I enjoyed being a professional cake decorator, at least part of the time, but I really believe in what I am doing in mental health advocacy, whether or not it ever leads to a paying position.
For three years people have been telling me to let it go and stop dwelling on my hospitalization, and though I know their intentions are often good; I also think they are part of the problem. People get committed to hellhole state hospitals like Warm Springs, and once they are stabilized they go back to their ordinary lives and pretend it never happened, perhaps because they are ashamed, or perhaps because they have been railroaded by some self-righteous mental health professional who refuses to validate their experiences. Either way, nothing changes and the people who run these sorry excuses for treatment facilities are never held accountable.
My psychologist told me the other day that every one of his patients who has ever been to MT State Hospital has a horror story just like mine. I personally have never met a woman who has been a patient there who wasn’t sexually assaulted. How could it all be in my head if all these people with no connection to each other say the same thing? Someone needs to fight back, and I feel like I’m in a position to do so. I may not have really hit my stride yet, but I know in my bones this is what I am called to do.
When Self-Injury Goes Mainstream
In a recent Rolling Stone interview, Megan Fox disclosed her history with self-injury, stating:
Yeah…But I don’t want to elaborate. I would never call myself a cutter. Girls go through different phases when they’re growing up, when they’re miserable and do different things, whether it’s an eating disorder or they dabble in cutting.
At first, when I read this I had my usual head-to-laptop reaction- Fuck me, yet another person perpetuating the teenage girl cutter stereotype- but when I re-read this statement I saw it in a different light. Yes, Megan Fox put her foot in her mouth by suggesting girls “dabble” in self-injury, but she also qualified this remark by saying she “would never call [herself] a cutter.” Perhaps in doing so Fox meant to clarify that some girls experiment with cutting and eventually outgrow it, and others do not. If so, quite frankly, I agree with her. I certainly never “dabbled” in self-injury, and like many people I will never simply outgrow this “phase” of my life. To some degree I will always struggle with it, no matter how long I go without cutting. However, as politically incorrect as it may be, I believe some teenagers and young adults actually do self-harm due to peer pressure, or to be accepted into emo culture, and I know I’m not alone in feeling like the growing awareness of self-injury has done more to normalize and make light of self-inflicted violence than to de-stigmatize, much less reduce it.
By now many people have probably heard of “pro-annie” groups instructing young women, in explicit detail, on how to have “successful” eating disorders. However, less well known is the fact that “cutting parties,” exchanging sharps, and self-injury contests have also become unfortunate realities of contemporary youth culture. I’ve witnessed on numerous occasions how peer pressure can fuel self-injury, particularly among teenagers and young adults, and though it’s reasonable to assume that young people who are compelled to self-harm in order to gain the approval of their peers are dealing with some sort of psychological disorder, this should not be taken as representative of all people who self-injure, many of whom suffer from chronic, lifelong mental illnesses. Many people binge drink with their peers in high school and college and eventually mature and curb their alcohol consumption. Other people develop lifelong addictions. The difference between alcohol abuse and self-inflicted violence (and yes, self-injury is both physically as well as emotionally addictive) is that no one seems to be under the illusion that substance abuse is simply a non-issue after age 21.
Megan Fox’s use of the word “dabble” is obviously in bad taste, and who knows what she ultimately meant by it, but more importantly her statement is problematic in that it reinforces two major gaps in public awareness of self-injury: the first being that self-inflicted violence (and, for that matter, eating disorders) can affect both genders, and the second being that self-injury can affect anyone, at any age.
How NOT to Be an Ally to Persons with Disabilities
This year, my inspiration for National Invisible Chronic Illness Awareness Week comes from a timely Care2 article about accessible parking for persons with invisible disabilities (in other words, how to get and properly use a designated parking placard, and how to deal with the hateful looks from passers by who presume you are robbing someone with a wheelchair of his or her rightful parking space). For the most part, the article has been well received and several people have related stories of harassment they or their loved ones have experienced for parking in a designated space despite not “looking” disabled. There have, of course, been a few critics, however, as well as a particular comment that caught my attention suggesting that persons who are obese should have their placard taken away if they do not “lose weight,” the implication being that obesity is simply a choice whereas “true” disabilities are not.
The interesting thing about this comment is that the person who said this was, in her mind, speaking out in support of persons with disabilities, when in fact all she accomplished was to prove the author’s point that onlookers presume to judge disability based on appearance. And it is precisely this phenomenon I would like to address.
When a person makes a statement such as, “Obese people should not be allowed to take up parking spaces reserved for the truly disabled,” (which is to paraphrase the actual comment) he or she presumes two things: firstly that persons with disabilities need those with ability privilege to speak up for them, and secondly that the disability community is one giant witch hunt bent on singling out “the fakes” who are screwing over the “truly disabled.” I’m not saying there aren’t con artists on public assistance, nor can I say, sadly, that a disability “pecking order” is entirely unheard of, but more often than not I think the general public projects these stereotypes and judgments onto the disabled population due to a lack of education or understanding of disability beyond the most obvious and well-known forms of physical and/or cognitive impairment. The irony is that under the pretense of supposedly laudable championing of disability rights, by putting persons with disabilities under a microscope so that they are too intimidated or dispirited to seek adequate assistance even when they qualify for it, such people are doing far more damage than the extreme minority of actual frauds ever could.
Of course, all people, regardless of ability, should get angry when some individuals actually abuse the system. For example, I think we can all agree that persons who have no disabilities, visible or otherwise, who use designated parking spaces for the sake of convenience are committing an illegal and unethical act and should be penalized for it. However, the general public needs to become aware of the fact that this judgment call can’t be made based a quick glance at the person walking across the parking lot. If a person has an accessible parking placard he or she has established a genuine medical need for it to a doctor, and only that doctor knows the person’s medical history. In fact there are many reasons, beyond a person’s control, why he or she may be both disabled and obese. It is entirely likely the disability caused the obesity and not the other way around. After all, it’s not exactly feasible for people struggling with chronic fatigue and pain to perform daily, vigorous exercise. Furthermore, several medications for various chronic illnesses lead to weight gain. For instance, I have been lucky but I know several persons with mental illness who have gained extreme amounts of weight on mood stabilizers. Other people have genetic conditions that cause them to be overweight, and even those who “just eat too much” most likely have neurological and genetic factors influencing their actions as well.
Part of being an ally to a particular group of people is to educate oneself, and make a genuine effort to take the pulse of general opinion within that group. In other words, let those who have actually lived and/or are living an experience define that experience. Presume nothing. In the case of disability, information gained from social conditioning is quite often incorrect and/or obsolete.
My advice to anyone who wants to truly advocate for persons with disabilities is to actually spend time among them, listening to their stories. My guess is you will discover that those with traumatic injuries and chronic illnesses, particularly those who are struggling to get disability benefits, are more concerned, not only with the daily challenges they face, but with how they are going to survive without an income or medical coverage, or how they are going to hire a good lawyer and win their case in court, than with knowing the scam artists are getting their due. Knowing that those who wrongfully receive public assistance are being ferreted out and penalized is a pretty cold comfort to those who have to get by on half their medications, or who have to skip meals to afford their groceries, or who- worst-case scenario- are homeless. I think it’s reasonable to assume that, for many persons with disabilities, their true moral outrage is directed, not toward the “fakes,” but toward the system that punishes a hundred honest people for the sins of every fraud.
How TO help persons with disabilities:
- Realize that the term “handicapped” is generally considered derogatory, and in reference to things like doors, vehicles, parking spaces, etc., the preferred term is “accessible” or “designated.” When in doubt, ask someone with a disability what he or she prefers to be called.
- Use “person first” language when speaking to/about those with disabilities. A person is not “disabled;” a person “has a disability.” Don’t define anyone as his or her illness/condition.
- Ask before you offer someone assistance. For example, don’t just rush to open the door for someone who has a visible disability. Some people may appreciate the assistance but some might find it insulting.
- Express your admiration to persons with disabilities for genuine achievements, as you would for anyone else, not for accomplishing day-to-day tasks. (Ms. Crip Chick blogged last year about a complete stranger coming up to her and thanking her for showing up to the voting booths in- gasp- a powerchair!)
- On the other hand, don’t presume it is your place or responsibility to push persons with disabilities to “do more” or “try harder.” Don’t assume that just because you know one person with a disability who holds down a job, or because you saw someone with a disability achieve something on a movie or television show, that this is everyone’s experience with that disability. (Not every cancer survivor is going to win the Tour de France!) Also, realize that most disabilities are cyclical, and that a person will have good days and bad. Recognize that a person with a disability is doing as much as he or she can at any given time.
- Realize it is in the pharmaceutical companies’ best interests to market their medications as “cure alls” rather than management tools. Just because a person with a disability is receiving treatment does not mean he or she won’t still have symptoms. Never judge a person with a disability for “letting it interfere with his or her life.”
(If anyone has anything to add to this list feel free to comment.)
I LOVE This!
No, Not You’s parody of women’s rape prevention strategies entitled “Sexual Assault Prevention Tips Guaranteed to Work” is absolutely brilliant (especially since it’s written with the same sense of imminent doom as those obnoxious “every woman must read this!” messages that get passed around).
Although tongue-in-cheek, in all seriousness, this post reflects a growing consciousness of the fact that men and boys (that is to say, in cases of heterosexual assault) are also and ultimately responsible for preventing sexual violence. Traditionally, the sole burden of responsibility has been placed on women to “avoid” sexual assault by never letting their guard down or taking unnecessary risks. Though some of these strategies are worthwhile (like not leaving drinks unattended) some of them aren’t effective (for example, not becoming “isolated” with someone you “do not know and trust,” given the fact that stranger assaults account for roughly 15% of reported rapes) and some of them are not only useless, they actually benefit rapists. To tell a woman she can prevent sexual assault by “making her expectations of a relationship clear” is to suggest that acquaintance rape can be a “misunderstanding,” which is precisely how most sexual violence is defended in court. (And I love how #8 turns the tables on just that!)
This Week in WTF: Reactions to Bachman’s Health Care Speech (Trigger Warning)
Apparently there was an article posted on AlterNet a week ago about Rep. Michele Bachmann’s (R-MN) recent comment that Americans should “make a covenant, to slit our wrists” in order to keep single-payer health care from passing. This was the first I’d heard of it (because, you know, making light of suicide in order to rile up your constituents isn’t provocative enough to warrant public outrage) and although at first this seemed like one of those totally idiotic remarks that made me roll my eyes and go about my day, when I read the reader comments in response to this article, such as, “Make sure you cut deep enough!” and, “Cut with the tracks, not across!” it really began to turn my stomach.
This issue of health care reform has sunk the level of debate in this country to a new low, and though I can’t deny there are those within the disability community who have taken this “Nazi death panel” rhetoric seriously, as far as I’m concerned conservative pundits are digging their own grave and Bachmann’s “suicide pact” is just another shovel full of dirt that isn’t worth dignifying with a response. The fact that so many people are willing to have a hearty laugh at the expense of those who suffer or have suffered from major depression, or who have lost loved ones to suicide, (right before World Suicide Prevention Day, no less) is another matter entirely. When will such flagrant disregard for mental illness cease to be a socially acceptable prejudice?
30 Things About My Invisible Illness You May Not Know
(In honor of National Invisible Chronic Illness Awareness Week (Sept 14-20) invisibleillness.com has composed the following questionnaire. If you have an invisible illness and/or disability and would like to help raise awareness, and you’ve ever been forwarded one of those “getting to know you” emails, then you know the drill. Copy and paste the following, replacing my answers with your own, and post the completed questionnaire to your blog or homepage. Then post the link to your page here.)
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Type 2 Bipolar Disorder, Borderline Personality Disorder, and Generalized Anxiety Disorder. Although most people would read these as ranking from an “actual illness” to a mental health “issue,” of all my diagnoses I find the anxiety the most disabling.
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: As long as I can remember.
4. The biggest adjustment I’ve had to make is: Making a conscious effort to stay active. I never knew how much hauling those wedding cakes around kept me in shape until I lost my job.
5. Most people assume: Psychiatric medications allow persons with major mental illness to lead perfectly normal lives, when in fact they only help to bring the symptoms to a manageable level… most of the time.
6. The hardest part about mornings are: Finding the energy to get out of bed.
7. My favorite medical TV show is: I liked the first three seasons of House but generally speaking I’m not a fan of medical drama. (And the depiction of bipolar disorder on ER was extremely negative.)
8. A gadget I couldn’t live without is: My computer, in particular the Internet. My online friends have proven to be my greatest support system.
9. The hardest part about nights are: Not being able to sleep, and being stressed about not being able to sleep.
10. Each day I take _6-8_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Would prefer them, but I haven’t found them to be effective enough on their own. I now consider them to be complimentary to mainstream medical treatments.
12. If I had to choose between an invisible illness or visible I would choose: There are advantages and disadvantages either way. A visible illness is easier to justify to other people but it also makes it impossible to hide in plain sight. Ultimately I think I would choose an invisible illness because it allows me to go about my errands without attracting attention. I can blend in right until the point where my relationships get personal, at which time people will either accept me as I am or reject me.
13. Regarding working and career: I used to be a professional cake decorator, and I miss it, but the greatest gift disability has given me is the understanding that the work we are meant to do in life may have nothing to do with a paycheck. If I hadn’t lost my job I never would have found my calling in volunteer work and activism.
14. People would be surprised to know: How powerful depression and anxiety really are. There are times when I am so depressed I don’t have enough energy to wash my face or brush my teeth, and there are times when I am so panicked I literally can’t move or answer the simplest question, like what I want for dinner.
15. The hardest thing to accept about my new reality has been: How difficult it is to live on public assistance. Like many people I was raised to believe it was a way for lazy people to take the easy way out. Actually it means extreme poverty and constant headaches.
16. Something I never thought I could do with my illness that I did was: Take care of a puppy. At first I was afraid I was too unstable to be responsible for her, but she’s a year old now and not only have I been able to provide her everything she needs, she has grown into a healthy, confident, and well-behaved dog.
17. The commercials about my illness: Frankly, saved my life. As much as I loathe the pharmaceutical companies and their “magic pill for everything” marketing ploys, if not for the commercials I saw I would never have known I had an anxiety disorder, or that such a thing even existed.
18. Something I really miss doing since I was diagnosed is: Telling people what I do for a living. I miss having an answer to the question.
19. It was really hard to have to give up: The social acceptance that comes from holding down a job.
20. A new hobby I have taken up since my diagnosis is: Jewelry making, which has actually worked wonders for my anxiety. Getting that tiny needle through those tiny beads takes all my attention and distracts me from whatever is causing me stress.
21. If I could have one day of feeling normal again I would: Unfortunately I’ve never actually felt normal, but if I ever did I would travel abroad. I’d love to see the British Isles.
22. My illness has taught me: Never to take anything for granted.
23. Want to know a secret? One thing people say that gets under my skin is: When people tell me, “Everyone gets depressed/nervous sometimes.” Yes, everyone experiences highs and lows in life, but these do not approximate clinical depression or anxiety, which can paralyze someone with negative emotions even when everything in his or her life is going perfectly well.
24. But I love it when people: Acknowledge what I have overcome in my life.
25. My favorite motto, scripture, quote that gets me through tough times is: We may never know the impact we have on other people, just by being ourselves.
26. When someone is diagnosed I’d like to tell them: To fight for the best care possible. Don’t ever settle for “good enough.”
27. Something that has surprised me about living with an illness is: I thought the greatest challenge would be to convince people of my abilities. It turns out my greatest challenge is to convince people of my limitations.
28. The nicest thing someone did for me when I wasn’t feeling well was: Visited me in the hospital. It’s a very special kind of person who will visit you in “the nuthouse.”
29. I’m involved with Invisible Illness Week because: The more people with invisible illnesses who tell their stories, the more the general public will have to take us seriously.
30. The fact that you read this list makes me feel: Honored.
Anniversary
It’s two weeks into my medication adjustment and I feel as awful as can be expected. When changing a psych med cocktail there’s always the likelihood of feeling much worse before one feels better, which is why I really wanted to do this in the summer, while things are relatively stable in my life, because I don’t think I could handle all the side effects combined with seasonal affective disorder and the “joys” of holiday family gatherings. I’m glad my psych nurse is being so aggressive with my medications; I would much rather feel terrible for a short amount of time and get it over with than chip away at my symptoms, little by little, over the course of several months; but despite taking enough mood stabilizers at night to put down a grizzly bear the only thing to which I really seem to be responding is the antidepressant, so my insomnia is worse than ever. In my mental health experience all things flow from sleep or lack thereof, so I’m definitely struggling right now.
On the plus side, however, I am approaching my one-year mark of not cutting, which ironically coincides with my three-year anniversary of being hospitalized. Naturally I am compelled to analyze my recovery since then. To the outside world it probably seems like I have barely moved an inch forward, but internally I have reached two major milestones. The first is that I have finally come to terms with my identity as a person with a disability, and though I am still at a loss for words when the “what do you do (i.e. for a living)?” question comes up, I have at least stopped living the lie that I will ever fit the mold of the average, employed person. In the past several months I have finally taken the time to stop and breathe and honestly acknowledge the constraints of my reality.
Secondly I have finally accepted the fact that treatment can work. Unfortunately the circumstances under which I was introduced to Dialectical Behavior Therapy made me very, even rabidly, resistant to it at first. In fact, my psychologist at the hospital said, “I think you think this is all bullshit,” and at the time I did. More importantly, at the time it was. The goal of DBT is to become aware of your warning signs so that you can manage your symptoms at the onset of a crisis state, the implication being that you access your coping skills from a place of relative calm beforehand. Unfortunately at the hospital I was in an almost constant state of panic that was going completely untreated. DBT is a difficult enough concept to accept just by virtue of the fact that self-injury feels really good when everything else feels excruciating. That medical professionals actually expected me to access my “wise mind” at a time when my physical and mental safety was in jeopardy on a daily basis as I waited for two months to even see a psychiatrist was simply asinine. It was only when I was literally and figuratively miles away from that godforsaken place, and I was able to experience some modicum of personal safety, that I was in a position to even begin treatment.
Of course I still struggle; (frankly I doubt anyone ever completely comes back from a suicide attempt) but I have also managed to white-knuckle my way through some pretty extreme symptoms, and I cope better every time. I’ve also accomplished this with precious little help from “The System.” Of course I owe some of my ability to stay out of the hospital to my intense fear of it, but I also credit the coping skills I have acquired along with the support of my peers. Three years ago I never would have imagined it would be possible.
A New Chapter
I had my first appointment with a psychiatric nurse practitioner a week ago to get the long overdue med change ball rolling. Now that I finally have my dual eligibility all straightened out and my medical bills are actually covered, I think I’m finally ready to aim for a cocktail that works and the halfway decent quality of life that comes with it (although Medicare has already denied coverage for one medication… let the bureaucratic bullshit begin!)
It was a very difficult appointment. This woman was astute to the point of being uncanny, and probably had me more figured out in one hour than my psychologist has managed in the I don’t know how many months I have been seeing him. It’s not surprising that my GP sent me to her, as I have always suspected he has more going on, ESP-wise, than he probably realizes. I think people who are extraordinarily sensitive are often drawn to the medical profession, and I’ve often looked back in amazement at how easily I opened up to my doctor the first time we met. (Empaths tend to send out an unconscious beacon that causes others to confide in them.)
It was also exactly what I needed. I go to these appointments always hoping the other person will be able to see through my mask, because it is only in rare moments of extreme desperation that I am actually able to remove it. There is something about treatment- talk therapy in particular- that has always seemed… well… improper to me. It really doesn’t matter if I am paying someone to see me at my worst; I go into my therapy sessions about as willing to disclose my faults as if I were interviewing for a job, ultimately making therapy a waste of time for all concerned.
