October 29 is World Psoriasis Day. I’ve already missed World Arthritis Day (Facebook link), which was October 12th. (I was too busy to write, then, anyway.) I’m going to bullet point out the conclusions I want you to draw from this post, before I get to the post itself. Consider this a TL;DR:
- Not all disabilities are visible. Many people are fighting battles that you can’t perceive.
- Some people literally have fewer hours in their day than you do, either because they need more hours of sleep per night, or because their body requires extra daily maintenance to work; some people have the same thing, figuratively, because their energy is sapped by pain, by their immune system, or by dealing with constant microaggressions. Read this fantastic post, so that you have a good mental model for understanding what this is like.
- Don’t judge people for their clothing choices or their shoe choices or whether they take an elevator or don’t want to go on a long walk or… just don’t judge people.
- Please go ahead and assume that someone living with a chronic illness knows how to treat it, or is seeing a professional who knows how to treat it. Advice is welcome only if it’s requested.
Facts and figures about psoriasis, arthritis, and psoriatic arthritis
Psoriatic arthritis is an autoimmune condition, which means it is one in a class of diseases in which one’s own immune system attacks their body tissues; in the case of psoriasis, the immune system causes visible problems with one’s skin. (Different kinds of psoriasis cause different effects. I won’t go into detail, except to remind you that none of them are contagious. There’s a lot of stigma around skin conditions, and people with visible psoriasis are far too often mistreated for something that isn’t their fault.) Psoriasis is the most common autoimmune condition in the US, affecting 2.2 percent of the population. Out of that 2.2 percent, the National Psoriasis Foundation estimates that between 10 and 30 percent of people develop psoriatic arthritis(1). This means that, in addition to skin issues (and other symptoms, which I’ll get to in a moment), the immune system also attacks joints and causes inflammation (e.g. pain, swelling).
A lot of what I’m going to say about psoriatic arthritis is true of other kinds of arthritis, so I’m going to share this statistic, too: according to the CDC, arthritis affects at least 22.7% of adults in the US and limits the activities of at least 9.8% of adults(1). It’s not true that all of these people are of advanced age, either: many kinds of arthritis can strike as early as one’s twenties. I developed psoriatic arthritis a little on the early side, but within the normal range: in my early 30s.
Osteoarthritis and rheumatoid arthritis are much more common than psoriatic arthritis, and probably as a result, treatments for PsA tend to come out later than treatments for other types of arthritis.
Because psoriatic arthritis is an autoimmune disease, as you’d imagine, the medications people take for it are designed to decrease (or, ideally, just redirect) immune response, preventing the immune system from attacking healthy cells. I’m not going to lie: all of these drugs are pretty scary. Methotrexate pills are probably the most common treatment, or at least the one doctors seem to try first; methotrexate is also used in chemotherapy, albeit in much larger doses. Even for low doses, it is sufficiently toxic that blood tests are required quarterly, to ensure no liver damage has occurred. Women taking methotrexate need to stop six months before trying to conceive a child, and must stay off of it throughout birth and breastfeeding; for people with sufficiently bad arthritis (like me), obviously, that is not workable. Drinking is contraindicated, although my doctor said I could have up to four drinks per week, provided I wait at least 36 hours after I take my dose. Its side effects vary by individual; I experience mild nausea—usually, so mild that a single ginger ale takes care of it—and low energy/decreased concentration on the day after I take it. And I have reduced immunity to disease, though I am not formally considered immunodeficient.
There are a number of other treatments, including injected methotrexate, alone or combined with another drug, and TNF inhibitors. They’re all scary.
Some people ask why people with psoriatic arthritis would take such awful drugs—which, by the way, isn’t a nice question; I guarantee they’ve done their research and thought hard about it. But this post is here to educate, so: if you wonder why one might consider it worthwhile, 1) probably you don’t experience constant pain, which is awesome for you! 2) With a warning that it isn’t pretty, I invite you to click on this Google image search link, to see what psoriatic arthritis looks like when it goes untreated. 3) Speaking only for myself, I was promised that, with the right treatment, I could go back to full functioning of my affected joints and be pain-free. While my treatment has helped, it is not sufficient to achieve that goal.
What it’s like to live with this disease: one person’s story
In the interest of personalizing this disease, so you can understand how one person experiences it and (I hope) act with empathy toward other people who might be experiencing it, or something similar, I’m going to share as much about this as I am comfortable sharing. … More, actually, because there’s a risk to saying any of this. Our biases against people with disabilities run strong and deep, and I’ve met good people who would judge me not worth investing in, on the basis of the next few paragraphs; at one time in my life, before all this, I might have. (I’d like to think not, but I don’t know.) Saying all of this may have a direct impact on my career, both short and long term. That said, I have a proven track record as a driven and successful individual in two different fields (going on three), and I am proud of what my CV/resume says about me. So… I’m prepared to take my chances.
My case of psoriasis is very small and went unnoticed, or at least untested, until after the arthritis started. It’s on my scalp. When I take my medicine, manage my stress, and get enough rest, it fades almost entirely away. It’s not painful and is almost never itchy. Its only effect on my life is that I occasionally appear to have dandruff, and I’m afraid to get my hair cut; I’ve had my spouse cut my hair at home, since it started. I don’t want to have the conversation with a hairdresser about it.
The arthritis, in contrast, affects my life daily. It is most apparent in my right hand and my left foot, and I’m not sure which is worse.
My thumb and wrist both have decreased range of motion and pain, and my wrist mostly can’t bear weight. (I can’t ever pick up a gallon of milk with my right hand alone; on a bad day, I can’t even pick up a full 4-cup coffee pot or a heavy plate. Yes, that is my dominant hand.) My middle finger and pinky take turns acting up, too. But it could be worse: I can type just fine, and I can mouse right-handed, though I am more comfortable using my left. I can’t use a trackpad with my right hand for long, so I avoid working on a laptop without a separate mouse and keyboard. Hand writing is a little unpleasant, but doable. I seem to be able to play guitar OK, and I can crochet and do beading for a little while at a time. I suspect cross-stitch would be too painful, but I haven’t tried it. Reading paper books hurts my hand (I love my Kindle), and I’m not supposed to use my iPhone with my right thumb.
As for the foot, the ball of of the foot hurts. Rounded-bottom shoes and custom orthotics help, but standing still for very long, or walking very far, still hurts. (This is a sad thing. Walking used to be how I dealt with stress, and it’s the number one suggestion of pretty much every arthritis-related organization.) Also, my fourth toe (what would be the ring toe, if toes were fingers) has changed shape; if you’ve heard of “hammer toe,” that’s kind of what’s going on. Until I get surgery to fix it—which is pointless until I’m on medication that will definitively prevent it from getting worse—any shoe with a restricted toe box is absolute torture to wear. Only last week did I find another pair of shoes that is almost as low-pain as Sketchers Shape-Ups (which, yes, are ugly; I hate the look people give me for wearing them) or the Teva sandals I found in Hawaii. Zappos probably hates me.
On really bad days, the arthritis affects my upper thighs and hips. Even on good days, my flexibility is decreased. But if you’re hanging out with me, and you see that I am having trouble getting up from a chair without using the arm rests or a table, it’s a bad day. (Then again, if I don’t try to disguise it, it’s a VERY bad day.) Before methotrexate, my hips hurt every day; I had to literally pull myself up the banister, to walk up stairs, and I was almost incapable of standing up from a chair without support (as in, I could do it, but it was excruciating — and worse the longer I sat before trying to stand). Now, I can walk up stairs without support on a good day and with only minimal support most days, but I still avoid them: I feel uncomfortable twinges in my hips, when I push it. (I avoid walking down stairs because of the foot, too. People glare at me for using elevators, probably in part because I’m also not a thin woman. I hate that.)
The hips and the wrist combined mean that I also can’t push myself to standing position from the floor without a chair or table for support. You’ll never see me use a bean bag or sit on the ground in public, because, dignity.
Finally, it’s not usually a big deal, but some of my joints are extremely painful if squeezed, though they don’t bother me any other time. (Poor rheumatologists. I grow to dislike them over time, because that’s an important piece of diagnostic information.)
None of that sounds all that bad, from an employer’s perspective—1-2 doctor’s appointments per quarter (more if I see a hand therapist and podiatrist, which so far I have not done in VA), and I’m less fun at happy hours. But here’s the kicker: like many others with autoimmune diseases, I need more sleep than most people (I’ve found that 9 hours is a hard minimum; 10 is better), and even when I get enough sleep, I have some days of fairly severe exhaustion. I do better than the person who wrote the spoons article, but not as well as someone without an autoimmune disease. If I go too long with insufficient sleep (more than a day or two), my arthritis gets noticeably more painful, my hips and knees begin to hurt, and my mind gets a little cloudy, so that I can’t focus and have trouble remembering things.
I’m lucky, because it doesn’t happen to me often, at least not when I’m taking care of myself outside of work. But that’s a whole other can of worms, right? I’m supposed to treat my hand and foot with heat or ultrasound; I’m supposed to get exercise that ideally doesn’t hurt my foot; I’m supposed to eat healthy food with a low inflammatory index (which, for me, appears to preclude gluten and at least some nightshades); I’m supposed to massage sore spots with a therapy ball; and I’m supposed to do things that I find calming, each day, since stress also increases inflammatory response and makes chronic conditions like mine worse. Somehow I’m supposed to reserve enough spoons—and enough time—to accomplish all of that, while working and getting enough sleep and meeting whatever other commitments I’ve made for myself. You can guess how well that goes.
Just a last couple of thoughts
I’ve tried to put myself in the shoes of people who might read this, so I can answer your questions, fill in any gaps in my behavior you might have noticed; if I missed anything, today is your one-time free pass to ask, because I’ve set aside some of those metaphorical spoons for explaining. (You can ask on another day, but I reserve the right to ignore the question, if I’m not up to it right then.) (Also, this is the third time I’m linking the spoons article, for anyone who didn’t click on it the first two times. Please read it. It’s very helpful.)
I’m afraid that those closest to (or employing) me might be angry that I kept this from you, or only told you part of the story; I’m sympathetic to that. My one defense is that it’s kind of a lot to get across (as I cross the 2200 word mark), and people’s responses, in the past, have varied from thinly veiled disbelief to making me feel super awkward by constantly reminding me of how different I am. Some people have pushed alternative therapies on me, um, fairly persistently. (I don’t mean the copper bracelets, Mom; science says they’re useless, but they’re pretty. :)) Telling people about how much my daily life doesn’t look like theirs is super awkward. And I guess I have one other defense, too: there’s a part of myself says that I shouldn’t have to disclose my disability in order to work somewhere that strives to be inclusive, as my employer does, or to spend time with friends. I work in tech; what field is there that could possibly have more space for someone with physical limitations? (I know that this is theory, not reality, and I hate that.) And most of my friends are pretty nerdy—with hobbies that don’t require great dexterity or strength; quite a few are pretty introverted—so it shouldn’t matter if I have to say no to going out (every single Friday, lately). But in little, subtle ways, it does end up mattering, both at work and in life.
So general awareness-raising wasn’t my only goal with this post; I am also deciding to stop trying to hide my disability. Not disclosing has made my life a little harder, because we don’t live in a society that makes room for disabled bodies. And I guess I’m tired of trying to hide something that is a big part of my life—and tired of fighting the tiny battles I have to fight, to keep it hidden.
So now I have this giant blog post that I can point people to, and maybe that’ll make the disclosure process easier for me. Or maybe it won’t, but I am hoping it at least makes some people stop judging one another for stupid stuff like shoes and elevators.