Asking about our conditions - Part 2 - What Not To Do
Jumping right on in!
There are very few situations where it is appropriate to ask a stranger what is wrong with them. When you get it wrong, Its a bit like congratulating someone and asking when they're due, when they aren't actually pregnant.
For me, Psoriasis becomes that topic that everyone "wants" to know, but don't really want to know. So I don't tend to talk about it in general conversation, and even when people ask, I've found most times they are doing it more so to be polite than to actually learn anything, so a vague answer is often given with a coating of verbal glitter to distract them and the subject changes and we move on.
Most of us have been going through the motions with Pso for quite some time, and we get somewhat used to what goes along with it. Some of us start to get our skin out more, open up a bit more and react less to others.
I can usually spot someone who is new to the secret society of Pso Warriors though. They are often hyper aware of the staring and looks from people. Veterans tend to notice but continue with whatever they are doing. New members tend to notice and react more. Some aggressively, (like I did. I've offered many a stranger photos), others will just flee the situation and try again another day. Having your hair down, over part of the face, usually a fringe or bangs if it's particularly noticeable on the forehead (I did it too, you aren't alone! But letting it see the sun more will help tremendously, I promise!). Wearing long sleeves and jeans on hot days, lots of layers at the beach, that kind of thing. I totally get it. I did all those things too. Well, not so much the long sleeves because I don't love heat stroke, but always covered as much as I could. Be Gentle with these people. They are especially self-conscious and trying hard to adjust and are probably on the verge of an anxiety attack just from leaving the house. Don't stare. Don't ask them shit. Just leave them alone. Let them be invisible. They'll appreciate that waaaaay more than any sympathy, advice or healing method you have to give. We all have days where we want to be invisible, let them have theirs.
Again, I can only speak for me, but these are my top tips on what not to do, if you have someone like me in your life.
1. Don't corner someone to ask. I've been followed to bathrooms at parties and social events just so folks could get me alone to ask what I have - "Its ok, you can tell me, no one else is here! I won't tell anyone, I promise!!" as if its some huge secret no one should ever know. I go to the bathroom to pee. Usually in a hurry. I have neither the time or desire to stand around in public toilets to give you a medical lesson. I've had a kid! I cant hold it forever! Just let me pee!
2. Don't make a scene! I've also been loudly asked, "Whats that red stuff on your face?" in a large group setting where everyone went quiet and turned as one to stare first at the asker of the question with a look of "You cant just ask that!!!" then as one again, turn to me because, well, since someone else asked...? Expectantly waiting for an answer. This will get you a response of "you know what Google is, right?" Google won't get offended when you type in "ugly red flaky skin rash thing", I will.
3. Don't ASSume. (yes, those letters are capitalised for a reason.) People assume a lot about you when you have a chronic health condition. Especially for one you cant always see. For me, my biggest pet peeve is when people ASSume "its just a rash". For me, my skin ranks about 10th on the list of things I worry about when it comes to my health, probably closer to 50th when it comes to my daily life. My PsA is my number 1 concern. It's the thing that affects me most. My skin can itch, and be sore, but it's not "stop me from walking" sore, or "not being able to play with or care for my son" sore. It's no fun, sure, but its a back burner issue, for me anyway. Annoyingly it's also the cause of most of the higher-up-the-list concerns.
A close second is when people ASSume I'm just using my conditions as an excuse to be lazy. I cant even wipe my son's butt at the moment because my shoulder won't let me. Some would see it as a blessing (and to be fair, some poops it definitely is!) but I see it as failing at my job of being a mum. I'm also almost always exhausted! Both the conditions and the drugs used to treat it cause that. Lucky huh! Please be careful what you say to us or those who help care for us. Something innocent and innocuous to you can be a huge deal to us. Some harmless jokes aren't so harmless.
4. Don't pretend to care. For me, personally, I would rather not have to explain it to someone who asks to acknowledge the flaky skinned elephant in the room, but doesn't really care to really know about it. I understand your thoughts behind it, and appreciate that you are wanting to show you are fine with it by showing interest, but if that is your aim, a simple "your skin is looking sore/ good today?" Is fine. I can choose how I want to respond, how in-depth I want my answer to be depending on how I feel. You've done what you set out to do in acknowledging it while staying supportive, and I can choose to continue the convo or respond and change the topic. No one is uncomfortable, and everyone is happy. I can always tell when someone asks and then instantly regrets asking as the discomfort shows while I respond. People also often don't know where to go from there aside from further down the rabbit hole, and then the awkward silence happens and you all but avoid me until one of us leaves. If you are genuinely interested, I can talk your ears off, as this blog will show. lol.
5. Please PLEASE Don't Play Doctor. I can not stress this one enough! I've had COUNTLESS encounters with people - from complete strangers, friends, family, you name it, who try to give me medical advice or TELL me what to do. NO. I have a TEAM of specialist doctors whom I have to see regularly. I Have a GP, a Dermatologist, a Rheumatologist, a Cardiologist, currently a Myofascial/ Thermo Mandibular Joint specialist and a surgical team to contend with. That is enough! While I understand you are just trying to help, chances are in my 26 years I've already tried it. If I haven't tried it, there was a reason for it. Additionally, Everyone is different. Take Humira for instance! I was 100% clear in 2 months. For others, it didn't even dent it, and in some cases made them even worse. Coming back to No.3 - Please done ASSume, because something worked for you/ your friend/ family member/ dog walkers Uncle Pete, it does not mean it will work for me. It could make me worse. I pay a lot of money to my Medical team to help me make the right choices for ME. Same goes with listing all the side effects and warning me not to get pregnant so I don't have deformed babies, or telling me to stop taking a treatment that is ACTIVELY WORKING to try your suggestion because you just know it will work. If you are not someone who has actually dealt with this condition or similar yourself, please, for my sanity, keep the advice to yourself, and if you absolutely must share it, message me with a link to your suggested treatment, so I can research it for myself. If you can't bring yourself to do that because you need the recognition for finding the treatment, then that's on you. I know not everyone feels this way, but please consider they might.
6. Think before you speak. If you or the person you loved most were to be asked the question you're about to ask me, would you be offended? Put yourself in our shoes.
Some questions are ok.
After all that, you could easily be lead to believe that I don't like to talk about my condition. This couldn't be further from the truth! I guess the old adage "Timing is everything" comes into play here -
Just pick your moments.
I'm writing this blog, partially in the hopes that people will get answers to the questions they might have in regards to us. I know when i'm in a flare, Its pretty hard to miss. I know that it draws people's eye, and piques curiosity. Most of the time, I'll still answer peoples questions, even if i'm uncomfortable because the way I see it, my sharing both spreads a bit of awareness, and hopefully prevents someone who feels more embarrassed, uncomfortable, or simply unprepared to answer, from being asked. I want people to know what it is to live with this condition and I want to spread awareness that it can be a serious and life changing condition.
In the spirit of this, the next post in this series will be a laymans guide to Psoriasis and PsA! A run down of what it is, how it works, causes, treatments, secondary issues etc. If you have any questions you would like answered in that post, please leave a comment below, contact me on any of my Social medias, email, which ever you prefer. If I get enough, I may do a dedicated Q&A post! I don't care how silly the question may be, I'll do my best to answer it. I promise I'm not the hard ass this post makes me out to be! I just may or may not have a few years of frustration under my belt :p.
Until the next one! Thank you for reading,
Millz.
xx
There are very few situations where it is appropriate to ask a stranger what is wrong with them. When you get it wrong, Its a bit like congratulating someone and asking when they're due, when they aren't actually pregnant.
For me, Psoriasis becomes that topic that everyone "wants" to know, but don't really want to know. So I don't tend to talk about it in general conversation, and even when people ask, I've found most times they are doing it more so to be polite than to actually learn anything, so a vague answer is often given with a coating of verbal glitter to distract them and the subject changes and we move on.
Most of us have been going through the motions with Pso for quite some time, and we get somewhat used to what goes along with it. Some of us start to get our skin out more, open up a bit more and react less to others.
I can usually spot someone who is new to the secret society of Pso Warriors though. They are often hyper aware of the staring and looks from people. Veterans tend to notice but continue with whatever they are doing. New members tend to notice and react more. Some aggressively, (like I did. I've offered many a stranger photos), others will just flee the situation and try again another day. Having your hair down, over part of the face, usually a fringe or bangs if it's particularly noticeable on the forehead (I did it too, you aren't alone! But letting it see the sun more will help tremendously, I promise!). Wearing long sleeves and jeans on hot days, lots of layers at the beach, that kind of thing. I totally get it. I did all those things too. Well, not so much the long sleeves because I don't love heat stroke, but always covered as much as I could. Be Gentle with these people. They are especially self-conscious and trying hard to adjust and are probably on the verge of an anxiety attack just from leaving the house. Don't stare. Don't ask them shit. Just leave them alone. Let them be invisible. They'll appreciate that waaaaay more than any sympathy, advice or healing method you have to give. We all have days where we want to be invisible, let them have theirs.
Again, I can only speak for me, but these are my top tips on what not to do, if you have someone like me in your life.
1. Don't corner someone to ask. I've been followed to bathrooms at parties and social events just so folks could get me alone to ask what I have - "Its ok, you can tell me, no one else is here! I won't tell anyone, I promise!!" as if its some huge secret no one should ever know. I go to the bathroom to pee. Usually in a hurry. I have neither the time or desire to stand around in public toilets to give you a medical lesson. I've had a kid! I cant hold it forever! Just let me pee!
2. Don't make a scene! I've also been loudly asked, "Whats that red stuff on your face?" in a large group setting where everyone went quiet and turned as one to stare first at the asker of the question with a look of "You cant just ask that!!!" then as one again, turn to me because, well, since someone else asked...? Expectantly waiting for an answer. This will get you a response of "you know what Google is, right?" Google won't get offended when you type in "ugly red flaky skin rash thing", I will.
3. Don't ASSume. (yes, those letters are capitalised for a reason.) People assume a lot about you when you have a chronic health condition. Especially for one you cant always see. For me, my biggest pet peeve is when people ASSume "its just a rash". For me, my skin ranks about 10th on the list of things I worry about when it comes to my health, probably closer to 50th when it comes to my daily life. My PsA is my number 1 concern. It's the thing that affects me most. My skin can itch, and be sore, but it's not "stop me from walking" sore, or "not being able to play with or care for my son" sore. It's no fun, sure, but its a back burner issue, for me anyway. Annoyingly it's also the cause of most of the higher-up-the-list concerns.
A close second is when people ASSume I'm just using my conditions as an excuse to be lazy. I cant even wipe my son's butt at the moment because my shoulder won't let me. Some would see it as a blessing (and to be fair, some poops it definitely is!) but I see it as failing at my job of being a mum. I'm also almost always exhausted! Both the conditions and the drugs used to treat it cause that. Lucky huh! Please be careful what you say to us or those who help care for us. Something innocent and innocuous to you can be a huge deal to us. Some harmless jokes aren't so harmless.
4. Don't pretend to care. For me, personally, I would rather not have to explain it to someone who asks to acknowledge the flaky skinned elephant in the room, but doesn't really care to really know about it. I understand your thoughts behind it, and appreciate that you are wanting to show you are fine with it by showing interest, but if that is your aim, a simple "your skin is looking sore/ good today?" Is fine. I can choose how I want to respond, how in-depth I want my answer to be depending on how I feel. You've done what you set out to do in acknowledging it while staying supportive, and I can choose to continue the convo or respond and change the topic. No one is uncomfortable, and everyone is happy. I can always tell when someone asks and then instantly regrets asking as the discomfort shows while I respond. People also often don't know where to go from there aside from further down the rabbit hole, and then the awkward silence happens and you all but avoid me until one of us leaves. If you are genuinely interested, I can talk your ears off, as this blog will show. lol.
5. Please PLEASE Don't Play Doctor. I can not stress this one enough! I've had COUNTLESS encounters with people - from complete strangers, friends, family, you name it, who try to give me medical advice or TELL me what to do. NO. I have a TEAM of specialist doctors whom I have to see regularly. I Have a GP, a Dermatologist, a Rheumatologist, a Cardiologist, currently a Myofascial/ Thermo Mandibular Joint specialist and a surgical team to contend with. That is enough! While I understand you are just trying to help, chances are in my 26 years I've already tried it. If I haven't tried it, there was a reason for it. Additionally, Everyone is different. Take Humira for instance! I was 100% clear in 2 months. For others, it didn't even dent it, and in some cases made them even worse. Coming back to No.3 - Please done ASSume, because something worked for you/ your friend/ family member/ dog walkers Uncle Pete, it does not mean it will work for me. It could make me worse. I pay a lot of money to my Medical team to help me make the right choices for ME. Same goes with listing all the side effects and warning me not to get pregnant so I don't have deformed babies, or telling me to stop taking a treatment that is ACTIVELY WORKING to try your suggestion because you just know it will work. If you are not someone who has actually dealt with this condition or similar yourself, please, for my sanity, keep the advice to yourself, and if you absolutely must share it, message me with a link to your suggested treatment, so I can research it for myself. If you can't bring yourself to do that because you need the recognition for finding the treatment, then that's on you. I know not everyone feels this way, but please consider they might.
6. Think before you speak. If you or the person you loved most were to be asked the question you're about to ask me, would you be offended? Put yourself in our shoes.
Some questions are ok.
- Does your condition have a name?
- How long have you had it?
- Is it painful?
- Is it genetic?
- Is there a cure?
- Whats wrong with you?
- Should you be in public?
- Do you regret having kids in case they get it?
- Can I catch it?
- Were you burnt as a kid or something?
Yes, I've been asked every single one of those questions. Would you be offended to be asked any of those? Would you want any of your friends or family to have to go through that?
Its all in the wording. I understand that sometimes what you say and what you mean are different, that sometimes things just bloody come out wrong, and that's ok! Your body language and facial expressions will tell me your intended meaning. I do it too. Jason is an expert at befuddling words. He reminds me of that fact before every serious chat we have. I wont ever take offence if there is no offence intended. But if your aim is to embarrass, criticise, or make yourself feel big by putting others down, I don't take kindly to it, and you'll know that very soon after.
After all that, you could easily be lead to believe that I don't like to talk about my condition. This couldn't be further from the truth! I guess the old adage "Timing is everything" comes into play here -
Just pick your moments.
I'm writing this blog, partially in the hopes that people will get answers to the questions they might have in regards to us. I know when i'm in a flare, Its pretty hard to miss. I know that it draws people's eye, and piques curiosity. Most of the time, I'll still answer peoples questions, even if i'm uncomfortable because the way I see it, my sharing both spreads a bit of awareness, and hopefully prevents someone who feels more embarrassed, uncomfortable, or simply unprepared to answer, from being asked. I want people to know what it is to live with this condition and I want to spread awareness that it can be a serious and life changing condition.
In the spirit of this, the next post in this series will be a laymans guide to Psoriasis and PsA! A run down of what it is, how it works, causes, treatments, secondary issues etc. If you have any questions you would like answered in that post, please leave a comment below, contact me on any of my Social medias, email, which ever you prefer. If I get enough, I may do a dedicated Q&A post! I don't care how silly the question may be, I'll do my best to answer it. I promise I'm not the hard ass this post makes me out to be! I just may or may not have a few years of frustration under my belt :p.
Until the next one! Thank you for reading,
Millz.
xx
Great blog. Thanks to share with us
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