OCDerailed

Hello my darlings,

As per my general luck, I’ve had an interesting year, health-wise. I was diagnosed by with a severe autoimmune disease back in March, and things have been a trip since. (That’s a blog post all on its own, but I’ll get to that another day.)

By the way, after the skin cancer scare a few years back, I made damn diggity sure on this diagnosis and went to four specialists to get confirmation. FOUR.

So, the treatment for this disease is taking chemo every week. I do this on Tuesdays at 4pm, and spend the next 24 hours curled up in a little ball of misery.

Every month or so, they adjust the dose of the chemo, going higher and higher until we can find a level that actually stifles the symptoms.

As with many diseases, you can’t really see what’s going on most of the time.

A weird bonus of this particular ailment is it causes rashes on my elbows, head, ankles, knees, etc. that can last six weeks or so. My elbows are the most common breakout spot. That, combined with deep ridges in my nails are a visible sign of the disease, and whether or not treatment is effective.

At my last appointment, I was told that the chemo should be stopping the rash, and they upped the dose to the highest level for the type of chemo I’m taking. The goal was this should stop the symptoms, and I was to watch for another rash outbreak, and should one occur, let the doc know immediately, and we would switch to a different, injectable form of chemo.

So, a month ago, when the rash popped back on my elbows, I knew I needed to call the doc.

But, like, I super very much hate needles and I put it off.

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On Monday, I bit the proverbial bullet and ovaried up, calling the doc. They told me to come in first thing on Tuesday to talk about moving to the injectable version.

And that’s what I did.

I’ve had good experiences with my rheumatologist. She can be a little cold and clinical, but she takes things seriously and listens well.

That’s how the beginning of the appointment went. Discussion as usual, exam as per the norm, and so on. She saw the rash on my arms, and seemed disheartened to see it’s spread much farther than before which is a bummer.

One of the symptoms of this fabulous clusterfuck of a disease is depression, so she asked if I’d been feeling anything in the depressive area.

I said that yeah, sometimes, but not to where I’d say I was having regular episodes, or anything out of the norm, and that I dealt more with anxiety than anything else.

She was confused. Anxiety wasn’t a typical symptom.

“Oh, yeah, no. I have severe OCD,” I explained. “I’ve been dealing with anxiety since I was about 8.”

Dude. I swear to god it was like a switch flipped. Her entire demeanor visibly shifted.

“Have you tried meditation?” she asked. “Yoga? Hot baths?”

I remember sort of blinking at her for awhile. Why, yes. In the last 27 years, I had tried all those things and more to wrangle anxiety. And I explained that I have a pretty solid hold on things, but I was just letting her know it was something I dealt with. And was, in fact, a yoga addict, which I’d mentioned to her at every appointment when she discussed how wild my range of motion is.

Yeah. I’m bendy. What’s up.

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She stood up, closed her laptop, and told me I needed to get into see a counselor or therapist. I explained I’ve been in and out of therapy since I was a kid. And that I’d actually canceled an appointment that afternoon with my other doc to talk about a medication shift and therapy.

She started to walk out of the room, and I stopped her asking, “Wait, I thought I was called in because we were changing chemos?”

Y’all. She turned around and said in the most condescending voice I’ve ever heard, “I really think you should just get into see someone and do more yoga. We can reevaluate changing chemo later.”

I realized I’d stopped being an autoimmune patient and become just a crazy person.

“Uh,” I said, trying to not lose my shit, “I’ve seen a lot of therapists in my life, and not one of them has ever been able to make psoriasis disappear from my body. OCD did not cause the rash on my arms. It didn’t cause the ridges in my nails. It doesn’t cause the swelling in my joints which you just felt. It doesn’t cause the heightened inflammation results in my blood tests. And I only came in today because you called me in. You said the rash was a bad sign. You said I’d have to switch drugs because it meant the chemo wasn’t working properly. You are the one who rushed me in here. I stay on top of my OCD. I am on medication for anxiety which you have been aware of since the moment I first saw you and gave you my medicine list. You review it with me every single visit.”

You guys.

She laughed.

She literally laughed at me.

Actual laughter.

“Just start meditating, and try to get in to see someone.”

And she left.

She just fucking walked right out the room.

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I was supposed to start the new chemo at 4 yesterday afternoon, and she changed her mind after finding out I had OCD.

Like.

What.

The nurse, who had been a good pal the entire time I’ve gone to this doctor, came in and tearfully told me she was being shifted over to the hospital, so I wouldn’t see her at this office anymore. She gave me a big hug goodbye.

When I zombie-walked out to the check out counter, I was informed the doc didn’t want to see me again for four months. I gaped. “I thought I had to be seen every three months to do blood work to make sure the chemo isn’t harming my liver and kidneys…?”

The receptionist looked confused. “You’re right. We do schedule like that. I wonder why she put you down for four?”

So the receptionist assumed it was a mistake, and put me in for one month out since we didn’t do blood work yesterday.

I went to my car and say in total shock. A minute later, the doc’s office number showed up on my phone.

It was her nurse. “The doctor just saw you didn’t schedule four months out. Why didn’t you do that?”

I started to explain what the receptionist had told me, but quickly lost my cool. “I didn’t schedule out because the I’m supposed to get blood tests every three months and since she didn’t take any today, I kept the appointment in a few weeks. And you know what? I came in today because the doctor told me to. Because she said I had to switch chemo meds, and I was scared to death to do that because I hate shots more than is reasonable, but I was told that was what I needed. And suddenly none of that matters because I have OCD? I scheduled a month out because that’s what I was told I needed before the doctor decided a hot bath will cure all my ills.”

The nurse, the same one who had just hugged me and said how much she’d miss me said with a sharp tone, “I’ll leave a note for the doc and get back to you.”

I’m not going to lie, I sat in my car and cried for a bit.

I’d been OCD-shamed.

I’ve been fat-shamed, mommy-shamed, money-shamed, appearance-shamed, religion-shamed, and a million other forms of judgment. These things happen fairly regularly.

I hadn’t been OCD-shamed since I was 12 and got the official diagnosis and the doctor told my parents girls didn’t need treatment for OCD since they were just naturally dramatic.

 

When the nurse called back a few hours later, when I was already in the middle of my regular chemo, sipping ginger ale and trying not to utilize my weekly puke bucket, and this is exactly what she said to me:

“We called in the new injectable chemo. If that’s what you really want to do, now you can.”

I literally gasped. “Uh, I don’t want to get stabbed full of poison, I only came in today because she’d been telling me for the last three months that this was the next step and that I needed it. The DOCTOR said I needed to change to it. If it’s not the right treatment, I want to know that. I just don’t understand how it was the right treatment at the beginning of the appointment and for the last few months, but as soon as I said OCD, all I needed was to meditate on regular chemo.”

“Well, it’s there now.”

And then she hung up on me.

I don’t have a happy ending here. I don’t have any words of wisdom.

All I can think is that I wish I could go back and take back the honest words of informing her I have OCD. To have lied and pretended to be sane and level so that our doctor/patient relationship could have carried on in peace and productivity as it has for the last 6 months.

And then I cried again because it felt like the only way to get proper medical care was to lie about myself.

I’m not sure what my next step will be. Whether I’ll look for another rheumatologist, or maybe chalk it up to her having a shitty day and taking it out on me in that way and give her another shot, I don’t know.

When I was first diagnosed with this dick of a disease, I remember silently being so happy there were visible symptoms, no matter how small. Sometimes I look at the rash on my elbows or the deep lines on my fingernails and take a deep breath knowing the pain I feel is real. The days where the flare-ups are so strong I can’t walk to the bathroom because my joints are so ravaged, I look at my elbows and nails and remind myself this is real. It’s real.

I’ve spent a lifetime of hearing doctors tell my parents that sure, I have OCD, but it’s no big deal because girls are dramatic. Or that my back pain was all in my head until a decade later, an x-ray was finally done and showed spina bifida. Or that the pain I felt in my knees probably wasn’t really arthritis, it was just because I was fat.

And so I sit here, rubbing my finger over the ridges in my nails, still nauseous from yesterday’s chemo treatment, and the resulting Wednesday migraine that comes with Chemo Tuesdays, trying to push the look on my doctor’s face, the sound of her laughter, out of my head.

I love you all dearly, and I hope you’re all having a fantastic week.

Peace, Love, and It’s real. It’s real. It’s real.

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