OCD means that even when I am exhausted or in pain, sometimes I can’t help but engage in my rituals and obsessive behaviors. In these times, I can find myself washing up the dishes, and then suddenly I’m doing laundry and cleaning all the counters and the toilets and I don’t know exactly how I got there. Especially because I still hurt.
When all the cancellations started, at first I wasn’t sure what I wanted to do with my appointments. Some of them were just canceled outright and for others, I had the option to meet via phone or zoom. Luckily, I have health insurance that covered them like a normal appointment so it was an option for me.
There are limits: I decided not to get blood work done yet because I didn’t want to go to a medical facility and risk exposure. That meant that my provider and I could only discuss and plan so much. Others worked better, in particular my psychiatrist and therapist appointments. I was able to make the hard decision to increase my medication after a steady ramp down over about a year.
With everything going on my anxiety has been on an upswing. I’ve struggled to sleep and focus. I’ve been obsessing about the little things again. I check the news too often. As a result, by talking with my psychiatrist and therapist I was able to decide to temporarily increase my medication.
This is a reminder that health, including mental health, has its ups and downs. Just because I was doing better a year ago or six months ago, doesn’t mean that I will be fine right now. If you’re worried about asking for extra help or help for the first time right now, don’t feel bad. You’re not the only one. This is incredibly stressful in so many ways and there are only so many things we can do or have control over. And that’s hard. Feeling helpless during a time when so many are hurting is hard.
I find that it is especially difficult to do nothing when I am anxious, even if that is the best thing I can do. I have trouble letting things go. I want to act even when I know it’s better not to do anything at all or to wait to do something. I want to send that difficult email immediately, I want to call that friend, I want to do something to relieve the anxiety I feel but sometimes it’s better for everyone else if I wait, think about it, and make a measured response that is best for everyone. And of course, right now, the best thing most of us can do is nothing, is to wait, is to stay home.
I need therapy now more than ever. A lot of us do because we don’t know when this will be “over.” No one does. And we need help dealing with that kind of uncertainty. Anxiety is all about uncertainty. Working through anxiety means sitting with it sometimes. We need help working through anxiety when things are hardest, like now.
I just finished reading Maybe You Should Talk to Someone by Lori Gottlieb. I learned a lot by reading it but I was thrown when she describes teletherapy as “therapy with a condom.” The implication is that condoms block connection and sensation, so sex, and in this case, therapy is not as good with them. However, I think many people would agree that that is not a reason to not use them, especially if they are your only option!
I personally believe that this is not a reason not to use telehealth, especially now. It’s also not a reason not to use telehealth ever if you’re disabled or don’t have access to mental health treatment in your area. In fact, it’s a reason to encourage full access to online mental health treatment and prevent barriers to such access like variations in state licensing or insurance rules. Hopefully, some of the easing of restrictions happening right now will persist after the worst of the pandemic is over. It would be a silver lining to the pandemic. Hope like that helps me manage my anxiety just a little bit better.
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.”
(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.
Lately, I’ve been beyond exhausted. Fatigue, exhaustion, and tired: nothing seems to cover how worn out I actually feel. I’ve had almost all of my IV iron treatments and I still feel wrung out like an old washcloth. I know it is normal for some people not to feel better until all of the treatments are finished. But it’s hard to know that intellectually and emotionally. Emotionally I’m impatient and frustrated.