Do You Talk Openly About Eczema and TSW?

I’ve always been more of a private person when it comes to things that really matter, especially in the workplace or large social settings.  For example, when I got married, I didn’t trumpet the news to everyone at my work (in fact, most people were very confused when I came in one day with a new last name).  If I ever decided to have kids and get pregnant, I wouldn’t tell anyone until people started calling me out for looking fat, and then I would just feign ignorance and pretend I made one too many trips to the all-you-can-eat buffet.  However, if I’m talking with you one-on-one, I’ll gladly expound to you about insignificant subjects like what I had for lunch, and I may well even start to share significant secrets, dreams, hopes, and wishes.

But eczema and TSW for me is a very, very private thing.  I mean really – do I WANT to subject my friends and family to current news about my swollen lymph nodes and oozing rashes in my groin?  Clearly here I’m putting myself out in the public with my blog, but that’s because it’s intended to connect me with the very people that ‘get it’, those that understand and nod knowingly if I want to vent about uncontrollable itching or have a long intelligent discussion about the pros and cons of different moisturizers.

I believe there are two general classes of thought when it comes to TSW and eczema, or really just chronic conditions in general.  One class that sides with me – derive inner strength from facing the struggle mostly alone, while seeking support and solace from those that really understand.  The other class is those that have little reluctance to explain their challenges and victories to most people that they come in contact with.  (I’d be betting to think the first class is mainly introverts, and the second class is mainly extroverts).

There are a couple reasons why I don’t fall into that second class (besides having a real strong tendency toward introversion).  I’d be willing to bet that most people I come in contact with have very little idea of the magnitude of the struggle of eczema and TSW.  Sure, there have been some people at work that commented on my skin (thanks a lot, you insensitive nimrods), but for the most part people are either used to it or they simply don’t notice or just thankfully don’t bother to comment (Right now, I can look marginally presentable – at least from far away- with the right kind of clothing – namely, long sleeves and pants – and a large-scale application of concealer).  So I don’t feel like talking about it because no one I know personally is going through the same thing and would not understand.  Actually, not even my PARENTS fully know about TSW – and now I LIVE with them!  They know I have eczema, of course, and I’ve alluded to going through rough times with it, but I just didn’t feel like opening up about all my personal struggles so far, nor walking around their house as the Little Red Lobster.

Secondly, I don’t want people to START noticing things about my appearance if they’ve never noticed.  It was like the time that a friend told me their nose was crooked.  I had never noticed it before for the life of me, but after that I couldn’t stop looking at their nose and mentally straightening it out.  I feel like the same thing would happen if I told people I had eczema – they’d start visually scanning my body looking for signs of it.

Thirdly, I don’t want people to try and start solving my problems for me.  It’s different when I’m here in the blog world communicating with fellow sufferers – here I WELCOME recommendations and tips.  But the general world at large doesn’t have a very helpful knowledge of eczema, probably just a vague sense of, “Well, you need to moisturize more” or “You must be allergic to something”.  Not helpful.

The other day I had an interaction with a co-worker that really reinforced my desire to keep things to myself.

Co-worker: (overly cheerful) “Hi there!  How are you today?”
Me: (pleasantly, yet reserved and dubious) “I’m good, thank you, and you?”
Co-worker:  (immediately launches into a story about how over the weekend she had “eczema” on her face, but she went to the doctor and they gave her this magical cream that cleared it right up, it might have started with an A, and it was so itchy, but oh my goodness, it was great stuff, although you’re not supposed to use it on your face for too long, and her kid has eczema but the doctor gave her something for that too, and she’s going back to the dermatologist today….)

Meanwhile, since she mentioned it was on her face, I’m scoping this out.  This person’s skin looks PERFECTLY FINE.  No trace of eczema.  No tell-tale signs of redness or dryness or puffiness.  Not to mention I’ve known this person for years, and they never had any skin issues.  I’m willing to bet they didn’t really have ‘eczema’ and the dermatologist just used that as a catch-all term to describe a little dermatitis rash she might have gotten.

Co-worker (still yammering on) “….so I just wanted to tell you about my experience, because, you know, you told me you have eczema!”  (triumphantly, like she’s trying to bond with me…or maybe pity me – even worse).  Now I’m getting highly annoyed.  Oh, this is special.  Let us bond together.  We can be eczema buddies.  We can skip around the office arm in arm spreading dead flaky skin like it’s fairy dust.  Here, you complain about the one tiny spot on your face, and I’ll complain about…. let’s see….the f-ing rashes and scars covering the majority of my body!!!  Also, it should be noted that this whole conversation is taking place in a completely public place at work (my desk), where a given 25 nearby people could be overhearing this if they really wanted to.  Because I really don’t feel like broadcasting my skin issues to my workplace (and if I do, I want to do it on MY terms – not with someone accosting me about eczema), this conversation is making me more and more uncomfortable.

I wanted to be like, “Listen, lady.  The only reason that I TOLD you have I eczema is because one day you kept staring at my neck and you asked me what was going on.  I couldn’t get away with the lie that I got rope burn from a secret international espionage mission where cocaine traffickers tried to hang me after I found the location of their secret drug cartel, so, rather than launch into my whole story; it’s far simpler to utter three little words – I. HAVE. ECZEMA., and hope you’ll move on.”

But, I was polite and held my tongue while the co-worker is still talking.  She finishes her sentence and looks at me expectantly like I’m supposed to be jumping up and down and begging to know more about the magic cream.  I slowly say, “You have to be careful with those creams and using them for too long; they can have VERY, VERY bad side effects.”

 

What about you?  Do you have casual conversations about your medical conditions with friends/family/co-workers?  Or do you try to avoid the subject and keep things more private?  Which approach do you think has been more helpful?

Advertisements
Tagged , , , , , , , ,

22 thoughts on “Do You Talk Openly About Eczema and TSW?

  1. Amanda says:

    I’ll talk about nearly anything. I wouldn’t say I’m necessarily an extrovert but I’m also not an introvert. HOWEVER, eczema is one thing that makes me really uncomfortable to talk about, just because it goes so deep for me, emotionally. Generally, I’d prefer no one know about it, or my childhood/teenage years with it. I hate it when people ask or bring it up, too. Any other medical condition,I’ll talk about fairly openly though.

    • That makes sense, considering it affected so much of your childhood! And now that you only really have to deal with it on your feet, I don’t blame you for wanting no one to know. I figured that you would reply and say you’re pretty open, because you kind of HAVE to be with celiac disease – so many social events, etc. revolve around food and I’m sure you got used to explaining yourself and what you can/can’t eat pretty quick!

      • Amanda says:

        Haha, exactly. I can’t get away with hiding that. I used to have a horrible fear that someone in my current life would run into someone who knew me when my eczema was AWFUL. Now, when it flares anywhere besides my feet, I get nervous that it will go back to being as bad as it was before.

        I can understand all the reasons you’d want to avoid talking about it. I get frustrated when people contribute to conversations when they really know NOTHING about the topic, too, especially when it affects you so much. Do your parents notice or ask about it?

      • Yes, I’m sure you’ve had your share of conversations with “well-meaning” people that tried to ask you about different foods or assure you that a certain food is ‘safe’ when it actually probably isn’t and they are completely uneducated about these things (I read the post you linked to the other day at Celiac and the Beast and I was outraged about their restaurant experience!!)

        My parents haven’t asked about it, but they are pretty ‘hands off’ people right now, I think their mode of operation is to just leave me alone for the most part since I have so much going on with the divorce and everything. I will probably bring up the TSW to them soon though.

  2. hbombschu says:

    Really good post. Basically kept nodding along agreeing with you the whole way down. This whole TSW thing is even more tricky because people generally have no idea what the heck you’re talking about. So I have tried to explain a few times to family members, but I feel like THEY are just nodding politely…having no idea what “crazy kick” I’m on now. Sigh. I feel ya girl.

    • Thanks Heather! It sure does seem like a “crazy kick” to people that don’t know. Oh the things I’ve tried… and I’m sure the things you’ve tried too… different diets, environmental things, topical stuff, supplements, etc.!!

  3. I have a tendency to barf out most of my thoughts once I’m slightly comfortable with anyone. Which may or may not be a great thing, lol. It was weird telling people about my allergies/eczema in the beginning, but it’s gotten easier. Sometimes it makes me feel guilty because all of these different exceptions have to be made for me and I feel like an inconvenience. It’s pretty hard for me to get around explaining why I don’t touch anything metal in public and why my desk is covered in glass and why I can’t eat certain foods blah blah blah. I feel like I’m educating people, though – like I’m spreading the word about the horrible chemicals in our products these days.

    There are definitely days I don’t want to talk about it, though. There are days when I don’t WANT that to be my identity and days where I wish I could stop monitoring what I touch and what I eat. So, I definitely get you not wanting to talk about it. It’s harder than a lot of people realize.

    • I totally get you on not wanting to be that “different person” who can’t touch/eat/use stuff! But that’s a great positive point that you can educate people! Even for me who “thought” I knew a lot of the stuff already about harmful chemicals, your blog has been really educational and informative about all the nasties hiding in our environment and personal care products!

  4. Louise says:

    I have had the same conversation so many times! I can totally relate. The one where the acquaintance (with great skin, feigning eczema) tries to advise on the cure. Someone actually bought me a tub of cream the other day. I smiled sweetly and took it and then threw it on the pile with the others!

    Anyway, you could just floor her by saying “actually, this isn’t conventional eczema. It is a condition called TSW and you treat it differently to normal eczema.”

    • Haha, I’m sure just like me, you have a huge pile of useless creams! Probably every chronic eczema sufferer does! Recently I went through and was able to donate a lot of unused stuff to charity and get it off my hands, thankfully. Your response is a great response, I’m going to use that next time someone brings it up. Or my other thought was to say, “I have an iatrogenic disease, my body was poisoned by topical steroids and now I’m recovering”…. let them think about THAT one and consider themselves lucky they don’t have to go through it!!

  5. As you continue through tsw you will figure out how to talk about it. At first I was private about it but after I went public on Facebook with my blog, tons of people came out who were using TS or prednisone. I feel like I have saved so many people from tsw that I think it’s worth it. Plus it’s the elephant in the room. At first I didn’t look too sick and tried to cover up all my symptoms. Once is got a certain point, I looked sick and it didn’t matter. I feel like I have to explain it because the assumption is I have cancer and I don’t want my friends and neighbors to think I might die. These days, I’m just telling people “I’m sick but it’s not terminal. Ill be ok in a few months”. If they want to talk about it I have no problem discussing it. After 5 1/2 months of explaining it to people, I have figured out the fastest and easiest way to explain it.

    • You make some great points, Leslie. It’s a lot more freeing just to get things out there and calmly explain to people, versus having to hide and worry that people are noticing. All of the viewpoints on this post have equipped me with knowing how to better respond the next time someone says anything!

  6. Courtney says:

    Oh my word I think we might share a coworker hahaha. I have one who has PORCELAIN skin but she has one tiny tiny bump on her pointer finger and constantly tries to get sympathy for it. She whines about how bad her “eczema” is. It makes me want to tie her down and bleed, ooze, and flake all over her to show her what eczema is haha.

    That’s a really good point you made about not telling people because then that’s all they notice. Sometimes people I’ve told will come up and say “let me see your face how is it today?” Really?? Not necessary.

    Great post!!

    • HAHAHAH omg I will totally join you in oozing and flaking all over your co-worker. I love people like that (sarcasm). Wow, that IS completely unnecessary – people are treating your face like a friggin’ Facebook news feed and looking for an update on its status, lol.

  7. Interesting post. Depending on my relationship to someone, I’ll tell them about what I’m going through. Former co-workers – not really except for a couple exceptions who asked me about it. I didn’t even go into detail with them, just that I had Eczema and used something that was bad for me and now I’m suffering for it. My close friends have been great. They’ve allowed me to go on about it for at least 10 minutes and have asked questions. My family doesn’t seem to understand as much, especially my one aunt who’s a nurse and believes anything MDs have to say. I’ve kept it simple with her and just say that the steroid creams have caused it, but every time I see her she asks me every time if I’ve seen a specialist yet (dermatologist?). I tell her yes I have and they only offered me more steroids. She thinks it’s the soap I’m using, the baths I’m taking, the air I’m breathing, lol. Truly eye-rolling.

    TSW is truly misunderstood and difficult to explain to people. I still think it’s worth the effort because like an above poster said, you could potentially help someone else from having to go through the same thing. No one told me about TSW. It took me months (7 straight months to be exact! I made it my full-time job!) of researching and researching to come across ITSAN. I don’t think I could take the 20 minutes it would probably take to decently explain TSW/TSA unless I knew that the person was open-minded simply because it is absolutely heart-wrenching to have someone ask me if it might just be allergies. At that point, I’d probably just walk away and grab an ice cream cone.

    • Wow, your friends ARE great! The story about your aunt is simultaneously amusing and SUPER frustrating. It’s nice when people MEAN well, but when they suggest every single thing as a cause, it makes it an exercise in futility. Might as well live in a bubble at that rate or not live at all.

      You and I are exactly alike then, in that it took us so long to come to the conclusion of TSW! I think I took exactly 7 months as well, ’cause I started this blog in July fed up with everything, and I just discovered TSW in January, but before that I was completely making ‘eczema research’ my part time job. I have scads of notebooks at home with products and ideas…and none of them worked. Hearing everyone else weigh in was really helpful because now I DO have a better idea of how to explain it to people.

  8. I don’t consider myself an introvert, but I’ve always hated talking about my eczema, topical steroid addiction/withdrawal, or any other health issue. I think because my issues are so physical, I’ve always felt robbed of the choice to keep these things private. Going through TSW, I’ve found it easier for me just to be up front about it with everyone I know I’ll be around regularly (co-workers, students, certain acquaintances). Even though I’d rather not share this part of life with all these people, it has lifted a weight off of my shoulders just knowing that at least they aren’t wondering what the heck is wrong with me. It gives me some control of the situation.

    Oh, and I’ve had tons of convos like the one you had with your co-worker….so annoying! Even my mom, who knows all about the hell I’m going through, will still complain to me about the “patch” of practically invisible eczema she gets on her wrist from time to time. I think she thinks it will make me feel better knowing I’m not the only one suffering. Ha!

    • Thanks for visiting, Katy! You make a good point that people are probably just trying to empathize with us – but it backfires a lot since they really don’t understand – I guess I shouldn’t feel too offended when some well-meaning person tries to do that. I also like your point about feeling robbed of the chance to keep these things private. It’s like you HAVE to share them whether you want to or not since it has to do with our appearance. How long have you been going through TSW? What’s your history with steroids, and are you close to being healed? Love to chat more since I like getting as many other people’s perspectives as I can!

      • I’ll reach the one year mark in about a week, though I still have a ways to go in terms of my healing. I would say I’m probably half way there. I plan to write a big blog update and post it some time within the next ten days or so with all the details!

  9. Teri says:

    I found this article very interesting. I am pretty open about things in my life, and talking about having eczema is no different. I try not to go on too much about it, or sound like im moaning about it, but i would like to help people understand it. Alot of people have no idea how much of an impact it can have on a sufferer’s life.

    I have had eczema all my life, and it is just a part of me now. People do stare at it, so i just stare at them staring at it, then they get embarrassed and ask me what it is. I just tell them. I want them to ask questions, as its extremely likely that they will know someone, either now or in the future, who has eczema.

    So generally i like to be open about it, and raise awareness of it.

    • Hi Teri! Thanks for visiting my blog. I like your approach – it’s important to strike the right balance in not complaining about it constantly, but making people aware of it because you are right, non-eczema folks have no idea how it can feel to be so uncomfortable in one’s skin. And if they KNEW, most of them would probably be more sympathetic. I’m sure it also feels a little bit good to embarrass rude people for staring! 🙂

  10. We absolutely love your blog and find most of your post’s to be just what I’m looking for.
    can you offer guest writers to write content for
    you? I wouldn’t mind producing a post or elaborating on a few of the subjects you write with regards to here. Again, awesome web site!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: