Building Your Online Lupus Community

Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published December 2010.

We are a community. A community filled with more diverseness than the most multicultural society. We range from infant to elderly. Our ethnic background is undiscriminated against, as is our location. We are male and female, with a wide range of sexual orientations and gender identities. We are single, married, divorced, widowed, in long-term relationships, dating, yet to enter our first significant relationship, sons, daughters, aunts, uncles, parents, brothers, sisters, friends and the list goes on. We each have a thousand different faces. But we are few and are spread around the globe. This can make it quite difficult to connect with others who have lupus. And having these connections and a support system is important, especially when you live with a disease as misunderstood as lupus.

Even if we do connect with others who live with this disease, we may not always relate, as we are a varied lot. In my experiences, connecting with others in real life, outside of the internet, with whom I can relate who have lupus is an almost impossible task. I joined the local support group and did not last long, as that group just didn’t “fit”. I ended up attending only a handful of meetings. As I live in a small-ish community, my local options are limited to the one support group. Thankfully, we have this wonderful thing called the internet.

Ever since I decided, about a year and a half ago, to talk in public more openly about my life with lupus (through the use of the internet), I’ve been able to connect with a few handfuls of really awesome fellow Lupus Warriors. The Lupus Magazine has become a wonderful, close-knit family. By sharing my own battles, I’ve been able to reach out to many people and let them know they are not alone. I’ve been able to work on a few lupus awareness and fundraising projects. None of this would have been possible without the internet. However, it is not without some negatives.

Because we can have such a difficult time connecting in real life, it can amplify any feelings of being alone, isolated and of not being understood that we may have. So when we decide to venture into cyberspace in the hopes to make a connection, ANY connection, with someone who may actually “get” us, we need to make sure we have full power to shields and that our bullshit detector is fully operational. Because, as unfortunate as it is, the reality is there are a lot of people online waiting to prey on the first unsuspecting person.

I have run into a few of these people myself; from snakeoil salespeople trying to sell some “lupus cure” to those pretending to have lupus in order to play out some game. Fortunately for me, I can smell bullshit a mile away, galaxies away in fact. I consider myself one of the lucky ones for this. Having this ability is a skill, one which most people have to work really hard at to acquire. And I’ll admit, sometimes I like to have fun toying with those who make the mistake of attempting to toy with me.

The snakeoil salespeople are easy enough to spot. Anybody offering a “cure” is one of those. There is no cure, plain and simple. Any one who is trying to sell that, well I’d like to sell them a nice warm beach front property at the South Pole. Those who fake having lupus, an autoimmune disorder or chronic illness, in order to play out what ever game it is they have in mind (motives could be anything from wanting to gather information to fulfilling some psychopathological need), those ones are a lot more difficult to spot.

Because we are heading into the holiday season and this marks a time of the year where we can feel the most alone and isolated, these types of people will be working overtime. And as a general rule, these people are members of the opposite sex. And the cost of falling prey to an online predator is much more than the cost of falling prey to a snakeoil salesperson. With the latter, you lose a few dollars and, yes your health will be greatly jeopardized, but with the former, you lose your dignity and faith in people. The psychological damage caused by the predator can be much harder to overcome than the physical and economical damage caused by the snakeoil salesperson.

As my holiday gift to you, I want to give you a few tips on how to spot these people and ways to avoid them.

  1. If you are part of an online chat community and you see someone who is doing more observing than sharing and only seems to want to share through private message, be leery.

  2. Watch out for those who seem really quick to want to be your new best friend. If they become pushy and keep giving you reasons why you should be new best friends forever after you’ve explained to them why you’d prefer not to, if they cannot respect even that simplest boundary, they are not really interested in friendship.

  3. Watch out for those who seem overly eager to appear as if they are exactly the same as you are and appear to want to agree on every thing. If you state an opinion that doesn’t match one they’ve already stated and suddenly they’ve changed their opinion to gel with yours, Danger, Danger, Will Robinson!

  4. Watch out for those who magically have every single illness and symptom you have. You have no idea what exactly their illness is until you mention one of your symptoms, then suddenly they’ll respond with something like, “Wow! Me too!” Remember, no two lupus patients are the same.

  5. If you are ever unsure, ask them non-leading questions. This is quite the skill to learn. A good place to start is with open questions. An example would be to ask them how their lupus manifests and what secondary disorders they may have. Then ask them more specific questions pertaining to anything they may list. If they deflect the questions or only ask about your symptoms and once again magically say, “Me too!” but then never offer their own tips and tricks (we all have our own toolbox of coping methods to share), I’d be leery. Where this becomes tricky is when someone is claiming to be newly diagnosed. Then it is perfectly normal that they’d be very inquisitive, as they have no answers and haven’t started to equip their own toolbox yet.

  6. Do not accept strangers as friends on Facebook. I cannot stress this one enough. There are some predators who search Facebook and request every one they come across who they see have certain illnesses. I know a few people who do indeed have lupus who’ve accepted people as friends only because they’ve seen the word lupus on part of their Facebook page. This point can be quite difficult for people to accept. People forget that when Facebook was started, it was intended to be a social network, only for those you went to school and/or worked with. Now Facebook seems to be becoming the new MySpace, which is a site for strangers to network. If you are wanting to accept any one who has lupus as a friend, I suggest you create a separate account for that or create a community page or a fan page. And if a stranger sends you a friend request and you see they have lupus, plus you see that you have mutual friends, email your mutual friends for a reference. Also, you can email the person who has sent the request and ask them why they are adding you as a friend when they do not know you. And please make sure your personal information (phone number, address, etc) is set to private (I’d prefer you set your entire profile to private but at the very minimum, set the sensitive information to private). There have been cases of other types of predators showing up at people’s houses, uninvited, because the person accepted every one and their dog and they had their home address visible for the world to see.

  7. Create a blog. This is another big one. If you have the need to share, vent, find others who either “get” it or find those who are just willing to accept it, have the need to purge, cry, whatever the case may be, blogging is a safe and effective way to share. Doing so helps create a mental shield. It allows you to become more self-aware of what information you are willing to share with strangers and what information you are willing to share with a very select few. It also allows for people to comment and share with you in return. Yes, it takes time to build up some type of readership but sometimes all it takes, for one to feel better about whatever the situation may be, is to purge their thoughts and feelings and having them out in front of the world.

  8. If a person seems too good to be true, they may just be. Trust your instincts. We have them in order to help us survive. There is no reason to feel guilty for rejecting a friend request. They do not receive notification that you’ve done so.

  9. As the old-adage goes, there is safety in numbers, even online. If you are unsure, have someone you trust sit in on the conversation and get their input. Make your conversations as public as possible. If the other party has an issue with this, that is another warning sign.

That is all I can think of the moment. I’m probably forgetting a few things but this is a start. I do not want to scare or alarm anyone because if it were not for all the wonderful connections I have made through the internet, my mental well-being would not be well at all. 99% of my experiences with people online have been fabulous. But there is that percentage of not good that you do need to be aware of.

Online predators look for specific people to target. They look for those who are single or are in unstable relationships, seem overly eager to make new friends, are lonely, are depressed; they look for those who appear the most vulnerable. And we all know how difficult it is to appear strong and self-assured when in reality we are quite vulnerable, especially when we are in need of even the smallest amount of understanding or support. It is during those moments of vulnerability when it is the best times to blog. You’d be amazed at how much support you will get and just how much of a relief it is, even if nobody reads it.

So go out in the wonders of the internet and connect with others. Just use your street smarts, or in this case, your cybersmarts. I hope you have a safe and happy holidays.

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