Scarleteen

I went to the doctor on Friday afternoon for a new appointment to get established for a new PCP. While there I told the doc about a rash I would periodically get, and currently have, on my upper lip. She took a look and told me it was probably a coldsore. She out in a lab order for me to get tested for HSV...I've been tested for HSV 2 and came back negative, but never HSV 1.

I'm really upset and horrified by all this. I have major hangups about illness but especially coldsores. I've always tried so hard to be careful and diligent and minimize my risk but it was for nothing. I feel disgusting and ditry and unlovable. I feel paranoid. I'm constantly washing my hands, I barely touch anything, I'm scared to put dirty tshirts in the hamper on the off chance I accidentally touched my mouth and then touched that same tshirt. I panic every time I touch my eyes absentmindedly.

My partner is so chill and supportive, he's not worried about it and reminds me I'm not "dirty" and that it's ok, it's not that big of a deal. I know the majority of pepole carry the virus but I feel awful in my body. I feel depressed. I feel so foolish for being so upset but that makes me feel worse. I'm paralyzed by anxiety and cant even do research to ease myself.

I don't know. I'm such a mess. My period also just showed up 2 weeks early, so that's extra fun. I'm sorry if this clutters the boards. Thank you.

No need for apologies, it's fine to ask about something like this here.

By all means, it sounds like we should talk about your issues with illness, to the best we can in a service like ours. But the level of feelings you're expressing here do sound pretty extreme, so they might be better suited for a qualified mental healthcare provider.

Before, however, we do any talking about this, I'm feeling unclear about if you did or did not get an HSV-1 diagnosis or not. can you clear that up for me? Knowing if you do or don't have this infection is something I need to know to figure out if specifics about this infection are things we need to talk about.

Thank you for responding to me! I had blood drawn Friday so I should know Tuesday my test results. I was previously tested for HSV 2 and tested negative, but this is my first time being tested for HSV 1. Does that make more sense? If needed I can come by Tuesday when I have results.

I just have such hangups about illness, I feel powerless and gross. I see a counselor and plan to talk to her about this, and to my doc when she calls, but I can only afford to see each provider so much.

Again, I'm happy to wait until Tuesday so we can better direct the topic if you want? I know you all are busy. Thanks again for taking the time to respond.

Yep, it does. So, I'll figure for now it makes the most sense to hold off talking about HSV-1 as if you have it, since we don't know, and to focus on the broader issues. It's okay to get started now with talking, if you like, but it's also okay to wait if you prefer.

I wonder if it might help to have a conversation that's a bit more personal, in terms of what I think I, personally, might have to offer you. I basically grew up in a hospital (back in the day when healthcare workers could get away with bringing their kids to work and letting us just run around, which probably wasn't the safest thing ever), for one, so my own attitudes about illness tend to be pretty radically different than your average Joe.

Too, I'm also someone who has lived with various kinds of illness or disability since I was pretty young, so it's also more normalized for me in that way, and I'm comfortable talking about how I don't think I'm gross or powerless without feeling at all defensive about it, or taking feelings like yours personally.

Does any of that sound like an angle that might be helpful to you?

I'm sorry for the delay, yesterday got away from me pretty fast. Yes, all if that sounds so supremely helpful, thank you.

I don't know, I always tried to be so careful so as to not get coldsores but now if I've got them...in feel foolish, and on the outside, like I need to warn anybody around me I've got them, that I can't share food or drinks with my friends anymore and everything has to be meticulously planned out and screened so as to avoid me and whatever I've got. It just makes me feel...bad.

No trouble.

So, let's not get too into HSV talk as if you have it before we know, but just to be clear, HSV-1 is a lot like a cold virus. It's one of those things where being careful is just only going to get anyone so far, because it's so common (it's more common for people to have it than not), and also because many people with it either don't know they have it to do what they can to protect others, or know, but don't know how to be aware of when they're contagious. So, if you now have, or ever do pick up, oral Herpes, know that won't be about not being careful. It'll be about simply being human, and about we human beings being very vulnerable to certain kinds of illness, no matter what we do.

Again, let's hold up with talking about what you can do to prevent others from getting it -- and what you don't need to worry about with that -- if and when we know this is, in fact, an illness you have.

In the broader picture, growing up the way that I did, basically surrounded by more sick and injured people than well people, I got the clear message that illness or injury are totally normal. In fact, people in absolutely perfect health through a lifetime is literally an impossibility: that just will not happen. And as you live longer in a lifetime, developing illnesses, getting injuries, or developing disabilities are all things that become more and more common. Chances are even awfully good that when you take a bus, or walk down a city street, plenty of the people you see who look totally healthy to you have some kind of illness or disability, or have lived with one at some point. So, it may be that one thing you can try and start to do is to adjust your idea about what's normal in this regard, and remind yourself that unless you're an alien or superhuman, you're not an exception here.

Illness isn't about anyone being dirty: it's just about us being human, and with things like colds, flus, zoster (like HSV or chicken pox) or other kinds of common viruses, it's about viruses and bacteria often being smarter and craftier than we are. None of us are somehow undeserving of love because of being human -- which includes illness -- nor disgusting by that token. I'm sure you don't think I'm disgusting for having lived with illness and injury (and heck, in my late twenties, two of my digestive organs literally exploded inside my body, dumping all their contents into my abdomen and landing me with sepsis, all of which is pretty literally about my body being taken over by waste), so this may also be a matter of checking yourself to be sure you're not deciding that something that doesn't change the value of anyone else changes your value. There are some ways some people think of themselves as exceptional that really don't serve them, like figuring they are exceptional in that something that's fine about everyone else is so not fine about them.

Can you fill me in on your experiences with illness before this, either for yourself or with others? How exposed to it have you been? Where do you feel like you've gotten the ideas about it that you have?

I generally only apply superhuman thought or expectancy to myself - other people don't apply, if that makes sense. Like, if someone said to me "Oh I have illness XYZ" I wouldn't be like "EW you're gross!" But when it comes to myself, well, I feel like I've failed myself.

I don't have a ton of experience with illness. I'm fairly healthy as is my family - as far as I know we don't have a history of any major illness. I have some friends who have chronic illnesses - diabetes in particular, and chronic pain - and I work in a nonprofit health clinic as the pharmacy coordinator so my job basically revolves around getting folks the medication they need for chronic illnesses (and sometimes not so chronic!) Because I have an aversion to illness, I've actually tried to expose myself to learning about it more. I mean, I like my job for plenty of other reasons, but one in particular is that it helps me better understand what people are going through in terms of illness. It's just hard for me to turn that compassion on myself. This is a pattern for me - I can be very hard on myself and it's difficult to get out of that berating loop.

Sometimes I feel pressure, though, because my family has been so healthy, that if I get sick or need medicine, especially a regular medication for something permanent chronic, that I've failed or I'm weak. My family has never SAID this to me and have always been very supportive when I have needed medication or I have been sick. But it's hard not to compare my struggles and say "well, mom/dad/brother never went through all this...I'm That Guy in the family, I guess..." So a lot of this is...implicit I suppose, or projected by myself, onto myself.

I think your approach to this in terms of work is really smart and strategic. Of course, if this stuff feels pretty deeply ingrained, it's going to take time.

You probably know all of this, but I'm going to say it anyway: being sick or having illness, injury or disability doesn't make anyone weak. In fact, as someone who is just starting to mend in some ways from around ten years of various kinds of pretty severe and constant chronic pain and illness, I personally feel like if and when we are, we tend to have to be stronger in order to cope, to go about parts of our lives our illnesses, injuries or disabilities make more challenging. And, of course, physiologically, when we are ill, our immune systems are working more, not less, and working harder, not slacking, so the notion that illness = weakness just doesn't even make sense from a factual standpoint, you know?

Same goes for the notion that being human, which includes illness at least sometimes, is some kind of failure. So much about illness is both random but also pre-determined when it comes to genetics that setting that up as something to succeed or fail at would be a bit like setting up the length of one's nose or the weather as success or failure, if you get me. That just strikes me as a really broken framework.

I'm curious, if you don't mind me asking, if this kind of unyielding perfectionism, and lack of compassion for yourself as a human being like the rest of us, shows up for you in any other areas, or just this one? This isn't the first time you've talked about yourself as "weak" for simply being human and vulnerable, so it seems like there may be a theme here that's not just about illness, but about...well, basic humanity and our vulnerability as human beings.

Ahh, that's such a good perspective, and you're so right! And I've HAD that kind of mentality about OTHERS before - like, my ex-girlfriend dealt with a host of mental and physical illnesses and I remember telling her, you're very strong to be doing what you do WHILE dealing with all this stuff your body and brain is throwing at you. But I...sort've forgot about that perspective until you just said it? If that makes sense!

I've pretty hard on myself...all the time. I just don't always see it, or if I do I just sorta bowl right through it. Others, like my mother, or my counselor, catch it for me sometimes. I joke that I play life on "hard" mode, and that if there are no outside challenges I create my own, internal challenges. It is a pattern, and the resiliency has helped me through some hard times (a toxic/abusive relationship, for example) but it's also made me anxious and driven me to feel hopeless. Like, I'm having a little bit of financial troubles right now and was beating myself up for it, distressed at how I'd have to change what put in savings so as to compensate for more bills/general life happenings. My mom helped catch me and tell me I was being hard on myself, but even still I feel that little voice start chattering like "if you just managed better...if you just cut more..."

I'm so sorry to hear that you've struggled with feeling that way through your life: that sounds very difficult and I can't imagine it doesn't often leave you feeling rough and make it so you have a very hard time enjoying your life and also taking credit for what you can do.

Because Scarleteen is a secular space, I try and keep most of my own spiritual life over on this side of the keyboard, but I will say that as a Zen Buddhist, compassion -- cultivating it for myself and others, living in a way that helps me to increase and demonstrate it clearly -- is a big player for me. I also know how hard it can be to cultivate, usually particularly for oneself. But if something that isn't exactly religious (Buddhism isn't an organized religion), but does have spiritual elements doesn't turn you off, I'd be happy to suggest a couple basic books that I know have helped me with that over the years. I grew up very much positioned as the person in my family who had to prove their worth, not be vulnerable in ways others were allowed, and where my value was very much often only recognized with superhuman achievements, so I get how hard it can be. On the other hand, I think cultivating compassion for yourself is probably one of the most worthwhile kinds of emotional work we can do: it benefits us, but it also always increases how compassionate we can be with others. If we can't be for or with ourselves, we're always going to be limited in how much we have for anyone else.

I've been trying to get better/have gotten better w/r/t being hard on myself. I think it used to be worse, and now when someone calls me out on it I can take a step back and say "oh...ok, yeah, I see what you mean!"

Sure, I would love book suggestions! Do you know if I can get them online or at a local library, or are these something that needs to be ordered from amazon or someplace similar?

I'll suggest a couple that I know are very easy to find, including in libraries. The extra bonus is that this stuff often involves mindfulness work, which has been strongly associated with helping people with anxiety issues very well over the last decade or so.

"Peace is Every Step," and "Creating True Peace: Ending Violence in Yourself, Your Family, Your Community, and the World," (IMO, attacking ourselves as weak, trying to make ourselves be something than other human, vulnerable and imperfect is a form of self-directed violence) both by Thich Nhat Hanh are, I think, good starting points, and he's very readable and doesn't tend to use use or talk about Buddhist concepts in ways non-Buddhists won't understand. You might also see if you can find "Start Where You Are: A Guide to Compassionate Living" by Pema Chodron, which might be a good one for you, too.

I'll have to see if I can snag these from the nearby university library...thank you so much for your help Heather! It was so good to talk to you and get your perspective, I appreciate it tremendously from the bottom of my heart.

I'll see what tomorrow brings and then probably pop back on here at some point. Thank you again!!

You're welcome: I'm glad to give you what help and support I can.