Wednesday, May 23, 2012

No-Handshake Awkwardness

Like many people with forms of autoimmune arthritis, I find it difficult to shake hands. The joints in my hands are often swollen and painful, so if someone goes for a firm job-interview type grip it’s likely to be excruciating for me. I have Raynaud's phenomenon, which mean I wear gloves or mittens all the time and somehow that just seems too much like shaking hands with a sock-puppet. Added to that, I walk with a crutch on my right-side, so if I’m standing I’m going to have to juggle crutch, bags and balance issues to be able to greet you.

I don’t expect anyone to be psychic. Even if you know someone has autoimmune arthritis, that doesn’t necessarily give you an idea of whether they will or won’t shake your hand, as it affects people in different ways. This can sometimes lead to some awkwardness, when a handshake is refused. Of course no-one wants to be left hanging, so I’ve compiled a handy list of appropriate and inappropriate ways to deal with the situation.

Appropriate Responses

  • Carry on as if nothing has happened
This is really the best way to go. It’s not really a big deal, and the quicker you move on the quicker the awkwardness goes away.

  • Acknowledge the awkwardness
If you don’t feel you can just move on, acknowledging the fact that the situation is a bit awkward, and then moving on, is a good way to go. 

  • Laugh
Not at the person! Never at the person. But if you can all laugh when you feel uncomfortable, it breaks the tension and all is well in the world again.

Inappropriate Responses

  • Insist on shaking hands
If someone is refusing to take your hand, whatever the reason, don’t push them. Often if the issue is pushed, I feel I have to relent and shake hands. This may seem like it makes the awkwardness go away, but it will likely cause me pain which will result in me avoiding you in future.

  • Punch the person
Sometimes you might want to try and find an alternative to shaking hands. There are some alternatives that are suitable – waving, a gentle pat on the back, a hug (depending on how well you know each other!)
Some things will depend on the person and how their joints are affected. A high five or fist pump may be okay (as long as it’s gentle) or for some people this may be even worse than a handshake. If you’re not sure, ask. 
Then there are other alternatives that are never a good idea – punching people hard on the shoulder for example (yes, someone really did this and yes they did then have to catch me when I nearly fell over.) FYI, people generally don’t like to be punched under any circumstances, but if you’ve just met them and they’ve just told you they have a chronic pain condition, this is a very bad idea and you’re likely never to see them again!

  • Bring it up repeatedly/apologise repeatedly
You don’t really need to apologise in this situation. As I said, I don’t expect people to be psychic, so I’m not going to get upset that you didn’t guess that I don’t want to shake hands. However, repeatedly drawing attention to it, either by apologising or just making comments/jokes about it can get frustrating. There’s only so many times you can say “it’s fine” or fake-laugh before you start to feel silly and embarrassed. The quicker you move on, the better.

  • Imply the person is germ-phobic and/or racist
This is a sure fire way to make a situation more uncomfortable! Generally if you make this kind of comment, you will get a stunned silence in reply as the person tries to figure out whether you’re serious or just have a dark sense of humour. I think the time this happened to me, it was a case of weird sense of humour, but I felt horrible about the possibility that they really were offended. In general, try not to take offence about the fact that someone won’t shake your hand. It’s not about you – a greeting is just not worth that much pain.

- Little Miss Autoimmune

Sunday, May 6, 2012

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty
Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.
You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.
The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”
Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.
When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids
It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”
If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.
If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.
When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel
Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.
They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.
There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.
Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.
If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 
Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!
*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.

Find the WAADwebsite here

Thursday, May 3, 2012


70% of the internet is just a giant ball of rage...

While I was struggling my way through the rain on my daily walk yesterday, I noticed one of my feet was getting particularly wet. When I got home, I checked, and yes indeed, the bottom of my shoe had worn through. I was a little upset, as these are undeniably very cute shoes, but then I remembered I had bought two pairs and retrieved the other from the wardrobe.

My eczema and psoriasis get worse with a number of things – sunlight, certain foods, and the most annoying one: the glue in shoes. That means my options for footwear are slippers or crocs/crocs knock-offs. Given that I have arthritis in the joints in my feet, slippers do not give enough support, so crocs are my only option.

There is an irrational amount of rage directed towards crocs. There are comedy routines, facebook posts, entire blogs dedicated to croc-rage.

I don’t understand it. No-one is making you were crocs, so your comments about how ugly they are etc. etc. are bullying to people who do. Plain and simple.

Seriously people, get over yourselves!

Usually if I’m in the room, when someone starts an anti-croc tirade, they will eventually realise and say “oh, but it’s okay Helen, you have an excuse to wear them.”

The last time I wore high-heels, I had pain so bad in my feet and lower back, it made me want to vomit. Before I discovered I was allergic to the glue in shoes, I had to sleep with my feet covered in steroid cream and wrapped in gladwrap because the rash was so bad and subsequent infections were causing a serious risk to my health. So no, wearing crocs is not a choice for me, but what if it was? 

Why exactly do I need an excuse to wear whatever footwear I want? Sometimes I think your shoes are ugly, but I don’t say it because that’s mean and I’m a nice person. When people make these kinds of comments, I usually laugh along and pretend I find it funny. I don’t. It’s mean. And honestly, it makes me like you a little less. Okay, I’m kidding about that last part, but it certainly doesn’t make me like you more!

You don’t know why someone is wearing crocs. Maybe they have chronic pain too, but are not “out.” Maybe they have a skin allergy which you don’t know about. Or maybe they just want to be comfortable, and you actually don’t have the right to make them feel bad about that. I really like my crocs. My growth was stunted when I was younger, and so I have to shop in the children shoe department. I love that I can wear pink shoes with butterflies on them, and if you think that makes me childish or immature, you live in the land of no imagination.   

I think the thing that frustrates me most about croc-rage is how do you have enough energy for it? I barely have enough energy to put my own shoes on in the morning, let alone care about what someone else is wearing.

If you don’t like my shoes, just look at my face. I know sometimes tall people are confused by the fact that my face and feet are closer together than yours, but seriously, it’s not that hard.

- Little Miss Autoimmune