Identifying as “Disabled”

I didn’t really start using the term “disabled” until this past fall even though I have had severe scoliosis and post-surgery pain and limitations since I hit puberty. The first time I used it was when I needed to be excused from Grand Jury duty. Up until then, I had organized my life as a college and then graduate student (with a rough year working in between) to accommodate my disabilities without having to ever formally register as disabled or ask for accommodations.

But the summons came near the end of my graduate student career when I knew that I couldn’t keep ignoring my body and pushing myself past my endurance. I was starting to have to call in sick more and more and cutting out all nonessentials from my daily routine, which included cooking, exercising, and seeing my therapist and chiropractor. Everything that was not teaching or going to class.

I wrote to my primary care provider at the university and explained my predicament. There was no way I could fulfill the requirements of jury duty, not without frequently calling in sick to recover from the full days sitting in a chair that the summons described. I felt at once lazy and weak and also like a pretender: calling myself disabled when I look fine and people probably wouldn’t guess that I struggle with chronic pain and fatigue stemming from my two scoliosis corrective surgeries in my teens.

This is an internal struggle that I’m still working through today. My back isn’t the only chronic condition I have—I also have migraines, OCD, anxiety, and currently am dealing with an inability to retain iron, the cause of which the doctors have not yet been able to identify. All of this means that I need a lot more downtime to recover and rest than most people.

It’s not unusual to have multiple chronic conditions, especially mental illnesses and physical illnesses. Additionally, it’s not a coincidence that I began to display OCD symptoms as a child when I was wearing a brace to correct my S-curve (to no avail). The obsessive hand washing and knocking on wood helped me feel like I had control over something, even if eventually these and other rituals were things that I hid for years until I couldn’t anymore.

Asking for a formal letter to be disqualified from jury duty for life was the first step I took admitting that I am not like others and have different needs. Eventually, I was able to leave my graduate program because my physical and mental health was suffering too much. Now I work from home, often in the evenings and nights so I can use my days to go to doctors’ appointments, see therapists, and exercise to strengthen my body to prevent as much decline as I can as I age.

As a result, using the term “disabled” feels right now. It means that I am part of a community of people who have similar struggles and experiences, even if we do not always meet in person (thank goodness for the internet without which my life would be much more difficult). It doesn’t mean that I am only someone with disabilities (no one is) but that I recognize that this is a big part of my life and identity.

At thirty, I have been managing my conditions for most of my life. I grew up disabled and I have become an adult disabled. I have no idea what it is like to not be disabled, nor will I ever. It is time that I embraced this term. Maybe telling my story will mean someone else will have less of a difficulty identifying as “disabled.”

What the world is like when everyone, and not just me, starts washing their hands obsessively

“Everyone is gross, so much grosser than I feared,” I think (maybe not entirely fairly) as a woman who has had OCD for twenty years and now realizes that everyone needs a pandemic and CDC warnings to wash their hands frequently and thoroughly, use hand sanitizer, and generally not track germs around.

I have spent years in therapy and taken drugs to try to reduce my need to wash my hands frequently. And now, everyone in the world is trying to learn how to be more like me. The cognitive dissonance is extreme. I’m not crazy anymore (at least for my germophobia and need to be clean), at least for now.

I’m not the only one carrying little bottles of hand sanitizer around or taking a pump of sanitizer after dropping of recycling or trash in the trash room of my apartment building. My husband doesn’t balk when I ask him to wash his hands after going outside, after taking off his shoes, before eating, and after a host of other practices. He doesn’t ask me to tolerate germs and dirt anymore. Exposure therapy is not relevant or even encouraged right now.

In fact, I see articles about lotions for extra dry hands that are a result of all that washing. Y’all, I’ve been testing out lotions for my hands for decades. My mom had to use baby oil when I was an adolescent to stop my hands from bleeding. By now, I know that I can’t skip lotion for a single night or my hands will crack. I get eczema if I let things go too far.

A few weeks ago, I didn’t really worry when there was a run on hand sanitizer. I had hand sanitizer. I’m never without it. I’m the person who brings it everywhere, including restaurants and offers it to everyone. I can tell you that now when I do that no one turns me down (And until we started social distancing, I was still sharing).

I use hand sanitizer after I use a public restroom because often there aren’t any paper towels or the trash can is far away from the restroom’s door. I do not understand the point of washing your hands if you’re just going to open the bathroom door with bare hands. I try not to think about the people who do or, worse, open the bathroom door after NOT washing their hands.

I wonder if restaurants and other public places will start putting the trash can next to the door. I can only hope that will be a positive outcome of all this.

I don’t understand how someone could go out without sanitizer. What if you touch a button for the elevator, hold the pole on the subway, or open a door? How can you then eat the free bread? It’s these kinds of questions that usually make me stand out from others but now many people are asking things like how long does a virus live on cardboard or can you get exposed to the virus through deliveries?

And you can be sure that we have plenty of Lysol wipes. I buy them in bulk from Costco and use them to clean my phone and wallet after I go out and about all day. My husband checked that we had plenty of wipes when all this started happening but I was not worried. I knew we had plenty. We also had plenty of paper towels, tissues, and toilet paper. I didn’t have to panic buy or buy in bulk because I already had everything.

In fact, in many ways, OCD has prepared me for a pandemic. Of course, I still overthink things (called rumination) and obsessively read and research the pandemic and keep abreast of all updates constantly (if I don’t work hard to cut myself of just like I did with WebMD years ago—nothing against WebMD but a person can know too much about all the potentially dangerous diseases and seemingly innocuous symptoms out there).

For the first time, my dad listened when I told him to use hand sanitizer and wipes on his recent flight home. He told me everyone was doing it. Suddenly (if I was still flying at this time), I wouldn’t stand out as the clean freak.

However, I still have to tolerate a certain level of exposure to germs, viruses, and bacteria. One thing I have learned even in my most severe bouts of OCD is that there is only so much one can do. It doesn’t mean we shouldn’t try (unless it becomes pathological such as with OCD) but there is no way we can protect against it all. And like the rest of this situation, that level of uncertainty is something we have to accept and sit with, whether we have OCD or not, and then hope for the best.

 

 

 

 

How the Swine Flu and COVID-19 Pandemics Seem Different as Someone Who Got Swine Flu in 2009

In 2009, I got swine flu. I had just returned to college from summer break, and either brought it with me or I got it from my roommate, who got it almost as soon as we returned to school. I got it a few days later.

I had barely heard of it at that point. Online research says that in mid-September when I got it, it had already been around since April. However, no one was all that worried or panicked about it. There was no shutdown.

When my roommate and I contacted health services, they told us to stay in our rooms for two weeks and wear a mask when we interacted with others (and with our third roommate, who somehow avoided getting it despite sharing a two-room dorm room with us).

We were quarantined but felt too sick to leave anyway. I remember being exceptionally exhausted and sleeping for twenty-plus hours a day. I had to ask a friend to email my professors and parents to let them know what was going on.

I’m not going to downplay how awful getting sick actually was—it was probably the worst flu experience I had ever had and with my back, the body aches were beyond awful. But no one was all that worried. It sucked and then, at some point, we got better and it was over. Most of our friends didn’t get sick and the school didn’t change anything. The dorms were open, classes happened, and life went on.

I don’t remember hearing much about it beyond the usual coverage of the annual flu season—like CVS telling us that flu is widespread in our area and to stock up on cold and flu meds.

So the past few weeks I have been trying to understand why this pandemic is so different. As far as I can tell, the mortality rate is similar (sadly, I remember that someone at my college who as immunocompromised did die after contracting it) and it also spread through all states eventually. It was an official pandemic (not the first of my lifetime either).

But there was no widespread response—definitely nothing like the shutdowns we’re currently experiencing—and I am confused by it. I don’t know if this is better—on the one hand, if we can prevent many people from getting sick and dying, that’s amazing!

On the other hand, the panic and stress from the constant 24/7 media reports seem like the opposite of a healthy response. I keep trying to stay away and then isolation makes me wonder what’s going on in the rest of the world (or even my town) and I got back down the rabbit hole.

I wish we could proactively and compassionately respond to a pandemic in a timely manner without resorting to fear and constant anxiety. I’m not sure what that would look like exactly but a responsible media response has to be part of it. Fear cannot be the best way to convince people to quarantine or practice social distancing. I know that for the many with anxiety and OCD that it just makes everything so much worse. It’s incredibly unkind to everyone who is trying to do their best despite all the uncertainty.

So, like many of us, I’m going to keep trying to update myself mindfully and at strategic times, focusing on a few reliable sources and not click on everything, especially the scary, panic-inducing click bait articles. The keyword is “try.” I will probably fail again and again through this period, but I will try because if I don’t, I won’t be able to keep my anxiety in check and that won’t help anyone, least of all me.fusion-medical-animation-EAgGqOiDDMg-unsplash

Photo by Fusion Medical Animation on Unsplash

Coming Back to Blogging During the COVID-19 Shutdown

I didn’t mean to take a break from blogging. It was a small break that snowballed into a medium break and then a larger one. The last few months have revolved around a new condition that I have had to get treatment for while also getting tests and procedures to figure out what is causing it. I was able to get a test done a couple weeks before the shutdown caused by COVID-19.

Now is as good a time as any, maybe better, to start blogging again as I sit at home and try not to ruminate. This week has been particularly hard because my doctors have canceled appointments that I have literally waited months for. Some have rescheduled. Others have not. I have another appointment at the earliest end of the shutdown period and I have no idea if it will get canceled or not.

person washing hands
Photo by Anna Shvets on Pexels.com

The stress from this has added to the general stress of having everything else canceled, including my regular exercise classes and therapy appointments like acupuncture, my worries for friends and families, and a general sense of not having any control. Things are changing so quickly. Last week I was doing okay mentally. This week has been harder. Like everyone else, I don’t know how long this will all last.

I also know that I have fallen back into some bad, old OCD patterns. I’ve been checking various news sites constantly and reading all sorts of new information constantly. My friends and family have also been updating me. I know reading information and following the news erroneously makes me feel like I have control of something, even though I don’t and it makes me much much more anxious. But I’ve struggled not to do it.

However, whenever I’ve gone offline even for a bit something happens. An appointment gets canceled, I miss a call from an office rescheduling an appointment, or I see a work email late. Missing these kinds of notices have just increased my anxiety.

Like many people, especially those with mental illnesses, I’m struggling with the anxiety of these times.

But I’m also glad that we’re staying home and we’re doing trying to do what we can to prevent this from spreading to everyone too fast. I believe that is important. Ironically, I wish we knew more so we could plan ahead but I know I can’t find that information online. We need to just be patient and wait for more research. And no refreshing of news sites every hour is going to do that.

I just have to remember that. And be patient, but it’s hard. I want to do something. But not my rituals. I’m trying to avoid washing my hands too many times and cleaning our apartment too thoroughly. I struggle with over-cleaning. I don’t need the CDC to tell me to wash my hands twice! But now everyone around me is acting more like me. They’re carrying hand sanitizer, wiping down their phones and surfaces, and washing their hands frequently. It’s weird. And honestly, I’m trying so hard not to overreact.

My body is already telling me to relax and take a break. My eczema has been exacerbated by all the handwashing and cleaning chemicals and I’ve been fighting with a migraine for days. At the same time, I am struggling to rest and sleep.

I’m trying to be kinder to myself and give myself permission to use my anxiety meds when I need them, take more breaks, watch more Netflix, and read more fiction. Having OCD and anxiety is just as real as a physical illness, and I need to treat them like that, especially now. We all do. It’s okay to feel awful right now even if you’re not sick with COVID-19. This is a crazy, awful time.

How I Balance Advocating For Myself as a Patient with Avoiding Hypochondria

(Disclaimer: I am not a doctor and none of this is meant to provide medical advice. This is just my personal experience.)

I struggle with being my own patient advocate and not being a hypochondriac. I know that having OCD means that I have a tendency to catastrophize and this includes imagining worst-case possible illnesses or medical situations. I know when I’m at my most mentally ill that I can see an aneurysm instead of a migraine or some other catastrophic illness in a simple flu or cold.

Balancing Patient Advocacy with Avoiding Hypochondria Continue reading “How I Balance Advocating For Myself as a Patient with Avoiding Hypochondria”