Category: Love, Your Brain

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How Psoriasis Affects My Mental Health

Genevieve8 Comments

I recently took my first dose of Stelara, an injectable medication known as a “biologic” that treats, among other things, psoriasis. I’m so excited, I could pop.

What is Psoriasis?

Psoriasis is an extremely visible autoimmune condition which results in red, inflamed skin with scaly white flakes. My immune system is attacking my skin, causing the affected skin cells to turn over at a dramatically accelerated rate (7-10 times faster than healthy skin!) The severity of my psoriasis can be seen not only from the outside, but from the inside as well. My bloodwork shows evidence of systemic inflammation, which puts me at risk of developing other illnesses, including psoriatic arthritis.

Treatment with Topicals

For the past 15 years, I’ve tried to make topical creams, ointments, solutions, and for a while, UV light treatments, work for me. Using topical treatments properly requires that you follow a schedule of twice-a-day application for two weeks on, two weeks off in various combinations of steroids, vitamin D derivatives, and whatever other prescriptions you’ve been given. It takes me about 30-40 minutes each time.

After about a week, I see definite improvement, which used to be incredibly exciting but is now a pointless exercise in bitter disappointment. As soon as I begin the recommended two-week steroid-free period or simply run out of motivation, my skin begins the infuriating cycle all over again, often worse than the last time. I have never had a period of complete remission.

A brown cardboard sign with white letters in cursive that say "feeling flaky?"
Yes, yes I am. (Spotted in a Safeway. Puff pastry, I think.)

Treatment with Biologics

I reached a tipping point. I don’t know what exactly pushed me over the edge, but I know that I can’t take it anymore. My psoriasis is “severe,” meaning at least 50% of my body’s surface area is affected. Topical treatments aren’t enough, so my dermatologist and I decided that Stelara is the best option for me.

Biologics like Stelara function by suppressing the immune system, which puts you at risk of infections and certain cancers, but the newer biologics are more targeted than older ones. They attempt to treat only the parts of the immune pathways that are going wrong, which reduces the impact on other immune system functions.

Take That, Psoriasis

It makes me anxious to include photos of myself in this post, but I’m tired of trying to navigate the steps I take to hide my skin. Do I dare wear something with an open back? Should I stick to shirts that go up to my neck? Better avoid dark colors so the flakes aren’t obvious.

Psoriasis has been squashing the self-confidence out of me since I was 10 years old. Knowing that I’ll likely deal with psoriasis in one way or another for the rest of my life, I’ve worked to derive my confidence from who I am rather than how I look, but it’s an internal conflict that I’ve never completely solved. I desperately want Stelara to work for me. It’s exhausting to be, on some level, constantly self-conscious. I can’t fully imagine how much of a relief it would be to put that behind me, but I also don’t want to forever be embarrassed about these years of my life. I don’t want psoriasis to win.

This is what I look like, and if you look like this too, know that you don’t have to fit societal standards to be confident in the skin you have.

A person's torso with large psoriasis plaques.

Living with Psoriasis and Self-Criticism

[In this post, I describe my feelings about life with severe psoriasis. I do not want readers who have skin conditions or any physical differences to be hurt by my self-judgments and insecurities. My words are about my experience only.]

It’s taken me so long to come around to the idea of taking a biologic because I blamed myself for not being more consistent with topical treatments. I thought that if I could just be more diligent, my psoriasis wouldn’t be so bad.

It was like boiling a frog; maybe I could have kept it at bay in the beginning, but it just got worse and worse. Eventually, I was so accustomed to it and so convinced that its severity was my fault that I chose to stay in the scalding water rather than get a lift out on a ladle. I also do this with my mental health; I must not be trying hard enough. If I just keep at it, I won’t need to accept more help. If that sounds completely unreasonable, it is – but it’s hard to change thought patterns like that.

Bottle it Up (don’t, though)

I’m 25 now, and my psoriasis is so severe and I’m so disillusioned when it comes to making a dent with topicals that I only use them “as needed” (in my view of “need”). When just twisting at the waist splits the plaques down to raw, bleeding skin and I can’t stand the torture of having unreachable itches in my ear canals, my motivation is briefly renewed. When it inevitably worsens again and I can’t manage it, I’m hard on myself for letting it happen then and all the times that came before. So in order to deal with despair over what I came to see as a failure to fix myself, I became an expert at avoiding the emotions of it. If I let myself fall apart every time I thought about it, I’d never move. It’s far more comfortable to disconnect.

The reality of living every day in this burning, itching skin is too horrible to acknowledge all the time. Instead, I bottle it up until it explodes. I can go long stretches of time feeling like I genuinely don’t care – as long as I cover it with my curated wardrobe of acceptable garments and don’t have too much psoriasis on my face, I’m really quite good at pushing it out of my mind.

But eventually, it’s like I catch a glimpse of it from a stranger’s perspective and am knocked over by the pure shock of it. It hits me suddenly and I break down into tears and fury and grief over how it holds me back and the hopelessness that it could be forever. I’m suddenly overwhelmed by how disgusting and ugly I feel – judgements that I try to keep beneath the surface, but which sometimes bubble up painfully. Then, I gather myself up, shove it all back down, and tell myself that self-pity is pointless. I basically close the Faulty Logic Door on the Emotional Vault until the next time it explodes. Super healthy.

Prioritizing Experience over Appearance

Despite the harsh messages I send to myself about my appearance, I still want to move through the world unhindered by social stigma. Lately, I’ve been pushing myself to wear clothes that make me a tad anxious and, with the exception of swimming, I never let it stop me from participating in things. I’m always worried that people will be rude or hurtful, but that’s rare and stems from ignorance, not malice. Some people stare at me and I occasionally get well-meaning but unsolicited and questionable advice from strangers, but I’ve found that the vast majority of people don’t even bat an eye.

Facial Psoriasis

By virtue of being literally on the face I present to the world, facial psoriasis is particularly hard to deal with. Everyone sees it and has thoughts about it that I’m not privy to. My fears that those thoughts might be judgmental and mean are hard to set aside.

I decided a long time ago that wearing makeup to cover my psoriasis was not worth it. Besides the issues of time, money, and probable skin irritation of heavy-duty foundation and concealer, my desire to fit in and feel confident bumps up against my belief that it shouldn’t matter. It seems like a step too far for me, but for others, it makes a huge difference in their confidence, so, to each their own.

Mild topical steroids and other prescription creams do improve my facial psoriasis considerably, but only for as long as I’m using them, which is sparingly. The skin on your face is delicate, and the decade and a half that I’ve spent using topicals makes me reluctant to risk the side effects of overuse or – God forbid – getting them in my eyes. That’s tricky for me, because I have psoriasis on my eyelids.

A person's closed eye with red psoriasis on the eyelid
A person's brown eye and eyebrow with irritated skin

On the left is how I wake up during a period of average/low inflammation. With very gentle soap, some careful flake removal, and unscented moisturizer, I can sometimes go from that to the righthand photo without using a prescription cream, which I save for really terrible days. I tend to have wonky, uneven eyelashes because, during bad flares, psoriasis spreads along my lash line and causes sections of eyelashes to fall out.

A psoriasis plaque that looks like a smiley face
A different kind of “facial” psoriasis

Interference and Feedback Between Psoriasis and Mental Health

Stress is a common trigger of psoriasis, which is hard to fix because having psoriasis is pretty stressful. As my mental health waxes and wanes, my psoriasis follows suit in an awful feedback loop. The stress of depression makes my psoriasis flare, and the hit to my self-esteem certainly doesn’t do good things for my depression.

My mental health definitely gets in my way when it comes to skincare. Even if I didn’t have depression, I probably wouldn’t be able to keep up with the treatment routine, but when depression makes getting out of bed and changing my clothes difficult, you can bet that I’m not spending an hour and 20 minutes per day applying goop to the skin I hate looking at.

Overwhelm and Support

Depression and psoriasis are both chronic and painful, and they both take a lot of work to manage. Metaphorically, the overwhelmingly hopeless experience of depression feels like trying to beat back a chronic rash that covers your whole body using nothing but a little tube of ointment. Each is a monumental effort that seems to never end. I’ve learned that tackling difficult, stigmatized issues gets a little easier if you don’t do it alone.

Balancing Impacts

Lithium, which treats my depression and suicidal thoughts, has the unfortunate side effect of causing or worsening psoriasis. (Is that a cruel joke, or what?) I’m not sure how much of an impact it’s had, but I suspect it’s contributed somewhat to the progression of my psoriasis.

A woman wearing glasses and a low-cut dress with spaghetti straps

[Left: After a dedicated effort to clear my skin in time for a wedding in 2018. It was brief but wonderful. Right: A terrible flare in the cursed year that was 2020.]

Starting Stelara

Any time I spent bullying myself about my skin and my willpower was too long. This change is not a failure, but a success in finally allowing myself to accept help.

Stelara is a momentous step for me; I’ll admit it’s filled with a fair amount of bitterness about how many years I’ve spent suffering, but also acceptance, excitement, and hope.

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a rushing river with white rapids and pine trees on the banks

Turmoil

Genevieve2 Comments

Well, my family is going through some big changes, I left my job, I’m doubting my medication choices, and I have no idea how to write about any of it. I want this blog to be helpful to other people, so I try to at least be informative and destigmatize conversations about mental health by being open with you. Over the last few months, though, I just haven’t known how to do that.

In all of the turmoil with my family, I’ve done a lot of thinking about growing up, boundaries, and how to deal with a changing perspective. The prospect of writing about it has been bumbling around in my brain, but I haven’t yet figured out how to write about it in a generic way so as to respect my family’s privacy. When I think about writing about other things like my job search or my depression, I don’t know how not to simply complain about them – how to add something more valuable. I miss writing on here, but it’s so hard to restart that I’ve been overwhelmed at the thought of trying.

For honesty’s sake: I’ve been struggling with my mood. My last ketamine infusion was not helpful, I secretly stopped taking my medicine for a bit (don’t do that), and I’m awash in feelings about finding employment – being a burden, feeling underprepared and incapable, the pressure of time, the stress of having no income, etc.

Maybe this short post will help me break through the inertia and get moving again. I have an old draft that will soon be relevant due to an upcoming positive change(!!!), so I might publish that soon. Ketamine is tomorrow, and that will also be altered, so I might have something to share about that in the coming days. Thanks for sticking around or for reading for the first time; I appreciate all of it and I hope that I’ll get back into the swing of things here going forward.

Genevieve ❤

Two women in a public bathroom passing a pad in a yellow and white wrapper between them

Let’s Talk About Periods and Mental Health

Genevieve2 Comments

May is Mental Health Awareness Month! One lesser-tackled mental health topic (in my opinion) is that of periods and mental health.

Invalidation: Public and Self

We often see in media the idea that a woman on her period is “crazy”- invalidating language that means it’s ok for others to ignore her feelings. I think it’s important to recognize that the hormonal changes we experience don’t suddenly make us different people. I, for one, become rather cranky, but not because I’ve developed a new set of preferences and opinions; I just have a lower tolerance for irritation. A much, much lower tolerance. Things that at any other time would simply make me shake my head suddenly either make me briefly, intensely angry or likely to burst into tears.

I find myself downplaying the effects of my period on my mental health all the time. I think it stems from its temporary nature. I know that it won’t last long, so it seems silly to let it take up much space on my list of mental difficulties. When I’m seeing red because somebody put a spoonful of cooked rice in the dishwasher and ran it, I invalidate myself. I tell myself that how I feel doesn’t matter because it’s caused by temporary hormones and my reaction is disproportionately intense. And it is temporary and more intense than is warranted. But the reality is, it’s extremely uncomfortable to experience month after month. Each small instance of unreasonable mood swinging adds up to something with tangible impact.

But it’s ~Natural~

Having a healthy menstrual cycle is a positive thing! If women for millennia have been dealing with theirs, why should I let mine be a roadblock for me? I’m sure women millennia ago thought it sucked just as much as we do, if not more. Modern methods of dealing with it hygienically and the availability of painkillers probably makes menstruating a good deal more comfortable for us. (Of course, there’s a conversation to be had about poverty’s restriction of women’s access to these modern resources. Not everyone enjoys the comforts of disposable period products. Here’s a good resource for learning about period poverty.)

There are definitely positive ways of talking about periods; their position in the menstrual cycle plays a vital role in fertility and reproduction, after all. That doesn’t eliminate the damage that periods can do to our mental health, however. We can recognize the beauty of a natural, cyclical process while also shaking our collective fists at Mother Nature.

A grid of tampons wrapped in plastic with no applicators on a light blue background
Photo by Natracare on Unsplash

PMS and Depression

As many as 3 in 4 women experience PMS. Symptoms include mood swings, irritability, crying spells, social withdrawal, and a host of uncomfortable physical symptoms. That alone is more than enough to be impactful when it comes to a person’s periods and mental health. And what about people who have a mental health diagnosis in addition to PMS? According to the Office on Women’s Health, “Many women seeking treatment for PMS have depression or anxiety. Symptoms of these mental health conditions are similar to symptoms of PMS and may get worse before or during your period.”

Personally, I can say with certainty that when I’m really struggling with my depression, my suicidal thoughts and the urges to self harm are worst leading up to and during my period. In fact, my period started a few days into my hospitalization in 2019 – a connection that I only made later on. The effects of the hormonal changes may be temporary, but my period is a setback to my mental health on a regular basis. And with an extremely serious thing like suicidal ideation, any factor that worsens it is nothing to be dismissed. Sometimes, even when things are getting better, I have sneaky, destructive thoughts because of hormonal fluctuations.

In those cases, it is helpful to remember that my period is to blame and that it will pass. I have to strike a balance, though. It’s easy for me to bully myself into feeling bad about slip ups and setbacks because “it’s just my period.” Hormones are powerful and their effects are very real, no matter how temporary.

Managing Periods and Mental Health

There are many ways to manage PMS for a better relationship between your periods and mental health. Many people find that lifestyle changes through diet, exercise, and healthy sleep are enough to improve their PMS, but your doctor might suggest other options as well. Hormonal contraceptives can help even out the dramatic peaks and valleys of hormone changes. For some people, PMS rises to the level of PMDD, or premenstrual dysphoric disorder. This can be treated through a variety of interventions.

It’s unfortunate that conversations about the mental health effects of the menstrual cycle are reserved only for certain private settings and are kept to a quiet minimum. Periods are a fact of life for many people. We should be able to discuss them openly as a legitimate factor affecting mental health. A survey of 1,500 women found that 58% have been embarrassed about their period at one point or another. 62% of respondents were uncomfortable even using the word “period.” Thankfully, there are many initiatives fighting stigma and working to provide resources to women and girls around the world, and we can keep the conversation going.

How does your period impact your mental health? Have you experienced period shame?

neon orange sign spelling change in cursive letters

I Want to Be a Quitter: Thoughts on Personal Growth

Genevieve2 Comments

Counterintuitively, stubborn determination is a trait that really holds me back from personal growth. It creates a cycle of unnecessary stress, anxiety, and avoidance that leads me to say “no” more often than I’d like.

The Cycle

When I start something, I automatically lock myself into seeing it out, even if I don’t like it, am bad at it, or if any number of valid reasons for stepping away from something crop up. So, the thought of doing something new comes with a flood of anxiety about entering into something I would never allow myself to quit. I worry about doing a bad job, letting people down, disappointing myself, ruining something, etc., and ultimately, being trapped in a role that doesn’t fit. So, I’m tempted to never start at all. It’s rather paralyzing.

But doing something new is not necessarily forever. You can quit things, and it’s ok. In fact, movement and personal growth can come from quitting, as taking new opportunities frequently requires that you let go of something else. It inherently results in change, and although change is uncomfortable, it’s how we grow. And so, I want to be a quitter, and despite the negative connotation of the word, I want it to be like one of those positive affirmations that I never say to myself in the mirror.

“I’m a QUITTER!” I’d say, and then I’d do some fist pumps and charge out of the house, ready to quit some things so that I can start anew, flush with the knowledge that if those new things go awry, I can quit those, too. I don’t want to quit everything, of course – I just want it to be easier for me to accept risk and not hold myself to impossible, permanent standards.

An Quick Anecdote About Quitting

I quit a job with no warning, once. In fact, I quit on the first day. It was such a terrible fit for me that the discomfort of quitting something was nothing compared to the prospect of working there every day. I called after going home and explained that, having experienced the job for a day, I definitely would not be able to do the job in a safe, satisfactory way. And it was fine! In fact, they thanked me for being frank with them. I felt awful for wasting their time, but in hindsight, it was 100% the right thing to do. Quitting was good.

Finding Personal Growth in Stressful Situations

For some reason, that experience has not completely impressed upon me the non-world-ending nature of most quitting scenarios. Just the possibility of encountering something I end up wanting to quit still causes me a lot of anxiety. But logically, I know that for the kinds of choices I make in my daily life, nothing catastrophic would happen if I chose to change things. Even in the worst-case scenario, my life would be likely be altered, but certainly not threatened. People are resilient. I could make it through the bumps of quitting, just fine, and I would probably find some ongoing personal growth along the way.

If only I could just quit my dedication to not quitting things.

black therapy dog with pointy ears laying on side raising head with one eye closed while covered in dry grass

My Unofficial Therapy Dog

Genevieve6 Comments

I’ve started bringing my dog to therapy. Does she sit with me and look patiently into my eyes while I cry? No, definitely not. She spends 10 minutes wandering around, smelling the smells of the week with great vigor. She pokes the diffuser with her nose, sticks her whole head in the trash can, and squeeeezes behind my therapist’s chair to not-so-sneakily smell her belongings. Then, she goes back and forth between the window and relaxing on the rug, ears perked up, listening for outside sounds. She comes over to me for pets and cookies every once in a while, but mostly, she’s just nice to have around as my unofficial therapy dog. She’s completely oblivious to my human problems. Looking at her blissful ignorance during therapy is like a brain palate cleanser.

You can’t help but wonder what she thinks of this development. Here we are, in this room we come to sometimes for no discernible reason. Pretty comfy. New smells since last week. 8/10. Would be better if I got second dinner. All that matters to her is that I feed her, walk her, and let her sleep at the foot of my bed. She’s a simple creature – intensely curious and frustratingly smart – but simple in that she really doesn’t need a lot to be happy.

She shares some of that innocent joy with me. She makes me smile every single day. It doesn’t matter how depressed I am – she does something goofy or sweet and has no clue that I find her antics ridiculous. Like how she leads with her face when encountering snowdrifts, or her exasperation at me taking constant photos of her, or the many, many hilarious faces of Sleeping Stella.

Sometimes, when I try to change something in my treatment(s), my depression says, “No, thank you.” Changing my medications has not gone well for me in the past, but I continue to clutch my personal dream of reducing the number of things I pick up from the pharmacy. I recently added a drug which required me to get off of something else, which overall, does not seem to have gone well. The options now are complicated and I don’t particularly like any of them, but I still have Stella! The routine, obligatory outdoor time, and turbo-boosted zoomies have done me immeasurable good. She demands my attention and action, and there’s really no telling her to just go entertain herself. Our walks are sacrosanct to her. No replacements. And no skimping on length, either!

This was part of my goal in adopting her, and it worked in more ways than just the responsibility of it. I thought that it would be healthy for me to be forced to get out of bed and do things, but that the emotional reward of that would come during my good times. I wasn’t expecting my unofficial therapy dog to be able to careen through the fog of my depression and make me smile every single day. A smile or laugh every day certainly doesn’t fix everything, but it’s something to be thankful for.

upside-down photo of woman and black dog lying next to each other showing movement in photo
“We’re snuggling! This’ll be cute.”

close-up-of-purple-bell-shaped-flowers-with-dew

Having Good Days with Treatment-Resistant Depression

Genevieve2 Comments

Every time I have a sudden improvement in my treatment-resistant depression, I’m blown away by how much easier life is. When you live with something every day, you get used to it. It no longer catches your attention when your symptoms don’t stand out from the daily noise.

Yesterday, I had a good day. I called a friend, went for a run, attended a virtual writing group, and only napped for one hour! This is a dramatic improvement from recent weeks. I can’t believe that such a mundane day could feel so novel and exciting. Today, I woke up and thought, “What am I going to do today?” Not in my usual, “I’m tired, every day is the same, and I’d rather stay in bed but I have to do something,” way. More of an, “I could accomplish something today,” way. I actually feel slightly enthusiastic about it. I’m looking forward to the near future but nothing in particular, which is a foreign feeling to me. It’s a kind of vague “the day is full of possibilities” feeling that is a dramatic change for me. I attribute this shift to a second ketamine infusion I had just a few days after my regularly scheduled infusion. The goal was to sort of trampoline-double-bounce me, and hooray – it worked!

I had a conversation somewhat recently about how easy it is to doubt yourself when you have a chronic, “invisible” condition. You might start to forget what “normal” feels like, which makes it hard to tell if you’re there or not. For instance, I often find myself questioning whether I’m being sluggish because of depression or because I’m not putting in enough effort. When you check in with yourself often (“Am I feeling better yet? Is _____ working yet?”) it’s easy to get bogged down in minute details and lost. But a sudden shift in my mood shows me that I can easily tell when I feel better. It’s a change that I notice right away. It’s somewhat validating, actually.

I also try not to dwell on the anxiety that this improvement could be short-lived. I’m accustomed to the very slow seesaw of my moods, which makes a worsening of my treatment-resistant depression at some point in the future seem likely. It’s an exercise in mindfulness to focus on the day as it happens. Right now is pleasant and noticeably easier than just a few days ago. The future will unfold as it will, so I may as well appreciate the present.

Here are some things I appreciate: As I’m writing this, my dog is asleep with her head on my legs. I can feel her twitching as she dreams of canine life. I’m astonished at how much she helps me – how important she is to my mental health. I’m grateful beyond words for her. It’s almost noon and I am still awake, having made it several hours past my usual nap. I’m getting tired, but that’s ok. I’m going to enjoy the improvements and be kind about the symptoms that remain. I appreciate comfortable clothing, raspberry tea, and the flexibility my job provides. I recently learned that clams have internal organs but mussels do not, and I’m thankful for Wikipedia. I appreciate my curiosity, both for random facts and for how far I can go with this newly lightened mood.

small-songbird-sitting-on-white-surface-with-white-background

Working on Depression

Genevieve1 Comment

Sometimes I feel like a bird that can’t figure out how to fly. I periodically get launched out of a cannon (in this metaphor, that’s due to IV ketamine treatment for depression), then flap and flap to no effect. I’m trying to make progress, but gravity is always there. Eventually, I sink lower and lower, just exhausting myself with all that flapping.

That’s how it feels, but I don’t think that’s entirely accurate. Yeah, ketamine wears off eventually, and yeah, my brain has a biochemical problem that means I can’t fix depression just by flapping. But the flapping is doing something. All that work I put into therapy and maintaining a routine and getting exercise must be functioning in tandem with the IV ketamine to push my little bird wings just a smidge farther.

I know this because my mood still dips pretty low sometimes, but on the whole, I’m in a better place than I was a few months ago. Perhaps it’s that I bounce back faster, now. Or maybe it’s just knowing that it won’t last forever.

And now, being able to look back and see that I’m flippity flapping on my own a little makes it just a little bit easier to continue. Chipping away at something day by day is tedious and frustrating, but all of that work adds up. If you can look back at where you were a little while ago, it helps to notice that in working on depression, you have made progress, even if it’s just in the personal growth or a skill you’ve learned or the support you’ve gotten.

Keep flapping, everybody.