Last week I wrote about the beginnings of my journey with PsA, the dietary changes I’ve made, and the effects of diet, medication, and supplementation on the arthritis symptoms.
Today I’ll tackle the skin issue. I have patches on both elbows, both knees, and the back of my head. The part that seems to really bother most people is the patches on the head. We can wear clothing to cover our limbs if we feel the need to hide the psoriasis, but the flakes from the head just don’t disappear as easily. Summer is easier, as many people find that a little sunlight, with its natural Vitamin D, makes the patches get a little smaller and less active, but what to do in the winter, when dark colors are the fashionable fave? Sometimes we look like we’ve been in a snowstorm that hovered over just us. I don’t try to hide my elbows at all. I hide my knees only because I don’t normally wear shorts or short skirts in public anyway, but if I choose to wear shorts, I just let the patchy knees show. All of the patches are, in fact, getting better. Between the medication, the supplements, the diet, and the topical treatments, all of the patches are getting smaller and smoother. I use a mixture of honey and cinnamon, 50/50, for an hour or more a day as often as I can, and it seems to be making a clear difference.
I have always had a head full of hair. Even with the psoriasis that was true, until I shaved it all off. It was really nice hair, too. In fact, the only part of my physical being that I have ever felt any real vanity about was my hair.
So the idea of removing it voluntarily was a difficult one at first, but as I thought about it, I began to see the sense in doing so. Like I said, I have (had) a full head of hair, and all of that hair made it difficult to get to the patches. I couldn’t really keep an eye on how it was progressing (or not), and putting any kind of topical treatment on was hit or miss at best. And if I wanted to get a little sunlight on there, the hair kept it too well protected.
So I pondered, and thought, and ruminated, and talked to my husband, and pondered some more, and checked in with a dear friend (the only person other than my husband whose opinion I asked for) and then finally, one day while my husband was at work, I just took the clippers and off it came. It makes it much easier now to put the honey mixture on my head!
I have to say that it was a very liberating experience. I made sure that the first run of the clipper was such that there was no going back – a broad swath of hair, right up the center of my skull, was there one minute and on the floor the next. Since that particular look is not good on anybody, I kept going until it was all on the floor. The longest bits were 10 inches of burgundy and white, and the shortest were around 4 inches. Too short to bundle and sell to a wigmaker, I just gathered it all up and put it in the trash. Lucky for me, I have a very round head, so if I want to go bareheaded I can with some success. But then the red patches are so very visible that I rarely leave the house without a headwrap. I’ve bought some lovely scarves and wraps over the last few months, and I often get very positive comments about them when I’m out and about. I wore the wraps to interviews (it did take a while to get a job, but it finally happened) and people rarely ask why I’m wearing it.
I don’t look sick most of the time so I don’t know what people assume when they see me in the headwraps. Maybe they think I’m recovering from cancer (a couple of women have made comments about a loved one who is “also going through chemo”), or maybe they think it’s a religious or ethnic thing (although few people are whiter than I am, so I’m not sure what ethnic thing they might think it is), or maybe they just think I’ve having a really bad hair day (which is technically true, right?). The thing is, I don’t have any control over what other people think about me, whether it is based on my appearance or anything else, and I’m too damn tired to care anymore. All I can do is be true to myself, do the best I can with what I’m given, and if other people don’t like the way I look, well, tough shit.
I spent the first twenty years of my life pretending that I didn’t care what other people thought, even though I was desperate for others to think that I was pretty as well as smart and efficient. In the time between then and now, I’ve gradually reached the point where as long as I like the way I look, and as long as my hubby wants to keep looking my way, I couldn’t care less what others think.
Now, I will admit that being a cultural anthropologist and folklorist allows me a certain leeway in how I dress that perhaps an actuary or a legal secretary wouldn’t have. That being said, I still believe that if a person looks different than the norm but owns it and is obviously comfortable in their own skin, they can still find employment and a circle of friends who appreciate them.
If people ask about the headwrap, I generally tell them the truth. I remember when I told my boss about the psoriasis (about two months after shaving my head), he looked so sad and said how very sorry he was that I had to deal with such a heart breaking health issue. That’s kind of him, but frankly I don’t see it that way. I’m dealing well with it, it isn’t likely to kill me anytime soon, and I don’t feel as if my life is that heart breaking. Yes, it’s difficult to manage the diet and the supplements and find the money to do the massages, etc., that help me feel better, but I’m not starving, I don’t live in an active war zone, and I don’t have to worry about physical violence in my home. I know that I am lucky that my insurance is affordable and covers the basics, and I’m very grateful. I know that others with this condition do not have that luxury (shouldn’t be a luxury, but it is). I guess what I’m saying here is that part of dealing with a long-term condition is perspective. The condition won’t go away because you change your perspective, but your relationship to your body and to the condition can change, and that might make all the difference in the world. It has with me. This isn’t my first long-term condition and I learned a long time ago that if I wanted to be happy, I had to find a way to look at my condition in a non-victimized manner, or it would not only rule my life, but rule it with an iron fist. It is what it is, and rather than fight it, I choose to look at the body as a whole and figure out what combination of factors might alleviate the situation. Maybe nothing will, in which case I re-evaluate my perspective and find a new way to look at things. Or maybe I’ll stumble upon the right combination of food and supplements and exercise that relieves the systemic inflammation and allows my body to heal itself.
In any case, my perspective will make a huge difference in how I feel and move forward. I love myself with or without hair, and while I hope that one day I can let it start to grow out again, I’m taking it one day at a time.
Hugs and healing to all who live with long-term conditions everywhere.
