Letting Go of Shame When You Can't Shower Due to Chronic Illness

I debated whether or not to share on this topic, because it can be incredibly embarrassing — bordering on shameful. But in the interest of transparency, and also because I know I can’t be the only one out there who has to deal with it, I come humbly before you today to discuss..

Showering.

*shudders*

This may seem like no big deal to your average Joe Six-Pack or Susie Shopping-Cart, but I’m here to get down and dirty with you (no pun inten… sorry! I promised to be honest. Every pun intended!) about what showering is like for me as someone with a chronic illness-based disability. And let me tell you, as someone who isn’t able to shower nearly as much as she’d like to, showering can become a really big deal, and it can start to impact your life in ways  you might never imagine.

First of all, I want you to know I never use any of my disabilities as an excuse to not shower or to avoid issues of daily personal hygiene. If I am unable to bathe with water, there is always a good reason behind that, so just know I make no excuses here. However, in a way, I suppose this might be considered an anthem of apology — if only to myself.

You see, some people out there can tend to make a person like me, who is unable to shower for legitimate reasons related to her health, feel as though she is simply making excuses not to bathe. Perhaps I am simply too lazy to properly care for myself, or I just stopped caring a long time ago, or maybe there’s some other psychological issue behind it. Other people have a tendency to jump to all sorts of conclusions about why I am unable to bathe regularly, and very rarely are those conclusions true. Even rarer are those people who are respectful enough to just come right out and ask why showering is a struggle for me.

I have more than one reason not to shower regularly, but the most important one is that I have a permanently placed intravenous catheter placed in my jugular vein — a port-a-cath, as it’s more commonly known. This port is not accessed all the time, so whenever it isn’t accessed (when there’s no a needle placed in the port to open up an intravenous connection through which fluids or meds can be administered as they would be through a peripheral IV for most patients), I can shower or bathe till my little heart’s content. And believe me, I do!

However, whenever my port is accessed and there is an IV needle in it, I absolutely must not under any circumstances allow any moisture at all to come into contact with that needle and the port access site under the sterile occlusive dressing covering it. This isn’t just a matter of hygiene or cleanliness for me, it is literally a matter of life and death.

You see, the catheter on my port drops straight down through my superior vena cava into my jugular vein to within millimeters of my heart. Whatever fluids I’m receiving intravenously through my port don’t have the added immunological buffer of passing through any of my lymph glands (as they would were I receiving them via a peripheral IV or even a PICC line). So if that central line on my port doesn’t remain sterile, my likelihood of contracting septicemia and then septic shock, a life-threatening condition and also a one-way ticket to what I’m sure would be a refreshing and entertaining stay in my friendly local ICU, increases exponentially.

All this is just to make the point that, for the four to six days a week my port is accessed, at the very least it’s in my better interest to not take sponge baths that come too close to the port access area on my chest. I know this may seem gross, but I don’t even use water to wash under my right armpit during the days when I’m accessed. And I never shower during those days. So if you know me well enough to see me in person, there’s a good likelihood it’s been days since I’ve showered when you and I talk. And let me tell you, not being able to bathe regularly has a huge impact on my relationships with other people!

Once again, in the interest of honesty and transparency, I’ll let you know I’ve figured out ways to be clean and dirty at the same time, if that makes any sense. I’ve gotten great at washing my hair upside down in the sink with a minimum of water, and so that the water drips forward and away from my collarbones rather than down my back. I’ve found some excellent dry shampoos in my trek through that forest, too. In my experience, one of the best out there and my own personal favorite comes from the brand Living Proof and is called Perfect Hair Day. This dry shampoo is great at giving body to hair that’s entered that sort of oily and lifeless phase, and it doesn’t leave a nasty powdery residue behind unless you overdo it. And it smells absolutely fabulous, with a clean, crisp smell that can go a long way when you haven’t showered in a few days and are starting to feel a little grimy.

Let’s talk about that a little bit, how not showering can make a person feel. Even if I’m clean, if I haven’t showered, I can still feel grimy. It can often make me stand-offish around others, especially when I’ve entered the last day of my port access and it’s been a week or so since I showered last. There have been times when my therapist has come to meet with me at my home, and when she’s leaned in to give me a hug at the end of our meeting I’ve almost pushed her away because I feel so self-conscious about not having showered in so long.

I know it’s not a rational reaction because even though I haven’t showered, I still take efforts to make sure I’m clean, and it isn’t as if I’m malodorous and stinking up half the house, but I do get paranoid about not being able to shower when I have to be around other people. If I have to schedule appointments or go out at all, I usually try to schedule around the days of the week when I know I’ll either be de-accessed and able to shower whenever I want to, or I’ll try to make appointments just after I’ve accessed myself so I don’t feel as though I’ve been hanging around and stewing in my own juices for the past six days.

It’s amazing to me how many different facets of life this inability to shower has affected. I honestly don’t think we consider things like this until they’ve been taken away from us. For instance, I even have nightmares wherein I dream I haven’t showered for several weeks, and I am literally stewing in my own juices to the point where I’ve become a disgusting slob. People like my mom, sister and close friends keep coming up to me and trying to give me hugs, but as they get near, they’re so repelled by the smell they can barely bring themselves to sit close, let alone give me a hug.

If you’re like me and there are medical reasons that prevent you from being able to shower as you’d wish, please know you’re not alone! And please know it’s not as bad as you think it is. If you’re like me, you tend to build situations like these up in your head until they become so much more horrible and unclean than they really are. But not only are they not nearly as bad as we think, there are also so many easy and simple ways you can maintain your basic daily hygiene and stay fresh even if you can’t take a “real shower.”

If you need help, The Mighty has some resources and ideas for ways to stay fresh when you can’t shower and products to make showering easier. You can comment here and I’ll try to help as someone who’s been there. Your local hospital or physical therapy clinic might have advice as well; nurses are used to giving patients baths right in their beds, without having to move them into a tub at all. Someone there might be able to give you pointers so you can maintain hygiene and cleanliness even if you can’t use water or move around easily to shower.