Posts tagged ‘February 2012’

March 1st, 2012

February Coaching Session: How to Improve Interaction with Your Community

by Amanda

February was all about Matchmaking for Health Activists – connecting you to your community members, fellow online health leaders, and even healthcare professionals (which will be our focus in March). We gathered so many great tips from you throughout the month that are helpful for creating deeper connections with members and utilizing your talents.

 

Here is just one of tips from our Coaching Session:

5

 

Work on your interactions every day.

Here’s are easy ways to do that:

  • Post a daily question to your members. It can be serious or fun.
  • Share a fill in the blank prompt to encourage conversation.
  • Use hashtags on Twitter to help connect to those looking for community.
  • Stay aware of trends – share them.
  • Make a Twitter list – connect with these people one-on-one.
  • If you feel out of the loop – ask someone what’s new or for a story.
  • See what others are reading, sharing, or discussing.
  • Look outside your condition for ideas.

 

 

 

 

Want to see all of the tips? (And which other Health Activists’ tips were featured?)  Sign up here and we’ll share new ideas, tips, and tricks every month to help keep you connected to your Health Activism and inspired by your community!

 

February 29th, 2012

#HAchat Recap: Finding “Dr.” Right

by Caitlin

As February comes to a close, we reflect on the ultimate quest, finding Mr. Dr. Right!  Finding the right doctor can make all the difference in your care, but how do you know he/she’s “THE ONE”??  Health Activists gave us tips for finding the right Dr. and maintaining a good relationship in this week’s #HAChat.

 

Know yourself, know what you want

You know what you’re looking for in Mr. Right, so why is it so different with Dr. Right?  While everyone’s care will be a little different, it’s still important to know what you expect out of your relationship with your doctor and to make this clear to them. This comes from knowing yourself and knowing what you need: as ShyDi47 said, ”U need 2 know yourself, ask questions also do some research on your dx so u r a step ahead of the Dr. Make yourself look smart.” Your doctor can’t read your mind, so communicating your needs and expectations is key to establishing a good relationship.   kimmieCollas says start off right,  ”on the first appointment, make it clear that you’re looking for someone to work WITH you, not dictate to you.” If you have doubts, or don’t know what you should expect, go to your community.  Many Health Activists discuss different healthcare providers within their communities.  kimmieCollas continued, ”decide what’s most important to YOU in a doc, then “interview” them to see if they might be a good fit.”

 

He’s just not that into you…

TiffanyAndLupus had it right: “You wouldn’t tolerate a lousy boy/girlfriend so DON’T let your doctor do it either. Take pride in your body & demand the best.”  Why would you ever put up with anything but the best care? Why put up with a doctor with great credentials if their attitude makes you feel worse for the wear after an appointment?  SickMomma said “I won’t stick with a dr w/lousy bedside manner. Communication is key 4 treating ongoing chronic illness, imo.” Then again, it all comes back to knowing the kind of support you need from your doctor: kimmieCollas shared, “I won’t deal with a rude doctor who treats me like an idiot, but they don’t necessarily have to be all “huggy” either.

So when is it time to say “enough” and find a new healthcare provider or seek a second opinion?

SickMomma T2: I struggle with knowing when to switch specialists. A sure sign 4 me is when they start losing interest in my symptoms/treatment

TiffanyAndLupus T2: When a doctor is rude; doesn’t follow diagnostic criteria/protocol; & doesn’t value my input as an informed patient I FIRE them!

Sometimes it’s just nice to get a fresh perspective, whether or not you intend to change healthcare providers: SickMomma told us, “Sometimes you need to visit drs outside local community to get a fresh viewpoint. Drs are often leery of contradicting locals.” Remember, you are your best advocate. TiffanyAndLupus: “Key is to not let MD credentials intimidate you. They may have a degree, but they don’t have the experience! We do!”

 

Getting the Best Care

Getting the best care isn’t just about finding the best doctor. It’s about being an active participant in your care. pamressler shared that, “”Best” care is individual to the person, a HCP needs to understand pts beliefs and values for care that is appropriate and valued.

The word “relationship” implies that you are also actively engaging with your health care team, not just letting them call the shots.  TiffanyAndLupusIt wasn’t until I became chronically ill that I became “hands-on” with my health. It took time but I’m glad I did!“  Your doctor may provide you with advice and tools, but how you handle your care is ultimately your decision (kimmieCollas).  So speak up, communicate, don’t be afraid to ask questions, and remember:

TiffanyAndLupus Whether you pay for your healthcare or not; it’s called health CARE for a reason. You’re to be cared for not “tolerated”.

March is Health Activists and Healthcare Professionals Month here at WEGO Health and we ant to bring some healthcare professionals into the conversation.  Do you know any HCP on twitter or active online? Invite them to next week’s chat!

 

 

February 27th, 2012

This Week’s #HAchat: Matchmaking with Your Healthcare Team

by Amanda
Photo credit jfcherry on Flickr

This month’s final #HAchat will wrap up our Matchmaking theme and act as a segue into our theme for March: Health Activists and Healthcare Professionals. Let’s talk about the relationships we have with our healthcare teams, PCPs, and how that plays in to our Health Activism.

 

Do you discuss your blog with your doctor? Does your doctor make recommendations that you share with your community? How do you know when you need to seek second opinions and what advice do you have for starting conversations about improving your care?

 

Join us tomorrow at 3pm ET on Twitter to discuss these topics and more! And – get ready for March – it’s going to be a great opportunity to see which HC pros are already using social media and how you think that more could get involved. http://tweetchat.com/room/HAchat


Why not share a tweet with your community letting them know about tomorrow’s chat? Here’s one to copy/paste:

This week’s Health Activist Tweetchat is on Matchmaking & Your Healthcare Team. Join #HAchat Tues at 3pm ET to discuss!



 

February 22nd, 2012

#HAchat Recap: Matchmaker, matchmaker, make me a match!

by Caitlin

Image credit violetknows on Flickr

February’s Health Activist Matchmaking Month is coming to a close and this week’s #HAChat focused on matchmaking within your online community.  Matchmaking is a great way to build up your network, help people help each other, and take some of the pressure off of you as a Health Activist and community leader. Check out these tips and tricks for matchmaking and why it’s so important.

 

The key to being a good matchmaker is working within your online community.  Members must feel welcome and feel like they are respected and supported by other community members. A great online community is filled with:

 

TiffanyAndLupus: honesty, mutual health/illness journey, compassion

 

NateOsit: a lot of strong personalities and an open and collaborative feel

 

KatherineS84: Supportive people, open minds, no judgment and honesty. The more you share, the more others will open up

 

Introducing people to each other within in your community is not only a great way to build your network but it’s also a way to take some of the burden off yourself as a community leader.  Matchmaking is a way to share responsibility as well as make members of your community feel included.  TiffanyAndLupus introduces lupies to each other all the time, especially if they have similar health questions, issues or concerns.  Giving your members roles within your community is a great way to avoid burnout, which can be a real problem for patient advocates.

 

TiffanyAndLupus: Advocacy burnout is another sneaky devil & I haven’t quite yet figured out how to escape her clutches

 

Jason31480: Giving yourself a day(s) off is important so you dont get burned out also – and important to your OWN health …. #HAchat

 

Bringing others into your community to share the work is also a great way to keep your community running smoothly.  And while it’s great to ask members to take on roles within your community, if you have created an open and supportive environment, you might find, as @TiffanyAndLupus did, that members will watch over each other and speak up for themselves.

 

In terms of introducing community members to each other, twitter is a great way to do this.

 

TiffanyAndLupus: Using twitter hashtags that pertain to our content can help connect us to those who are looking for community. #hachat.

 

NateOsit: T4 On Twitter, you can make a list of people you interact w/ frequently, and chat w/ folks regularly #HAchat

 

Jason31480: Yes twitter hashtags can really go a long way. I try to use the #CDSN tag when appropriate – also have a list of members on twitter #HAChat

 

You can also use an #ff or add a cc with a group of people that have something in common.  Other ways to connect members of your community include setting up a mentor program. As Jason21480 shared, “Setting up a mentor program can be a great tool as well – matching members up together who have similar interests, symptoms, etc.”

 

#HA Chatters also had some great tips on how to make your daily online interactions better:

 

Jason3184: – pose a daily question for your members – it can be serious or fun. Such as “You know you have IBD when …” #HAChat

 

TiffanyAndLupus: Remember to respect your own health or you will not be able to help anyone! Take care of your needs so you can help others. #hachat

 

ShyDi47: We all need 2 take care of one another, @ work 2 gether @ come 2 gether as a Community that is vital either online or offline. #Hachat

 

TiffanyAndLupus: Humor is your friend! Use it to help lighten the day; never underestimate the power it has to travel online & help someone else. #hachat

 

Have any other tips on how to make your online interactions better? Think some of your community members would hit it off? Connect them today and share new ideas for connecting people here: editorial@wegohealth.com!

 

Tune in next week for the kickoff of March’s theme: Health Activists & Healthcare Professionals.

 

 

 

February 21st, 2012

Today’s #HAchat: Matchmaking In Your Health Community

by Amanda

Image Credit: dalboz17 on Flickr

Health Activists wear a lot of proverbial hats – today let’s look at the host/hostess hat.

If you think of your blog or site as a the location of a party you’re throwing, and all of your readers or members as guests – you’re in the host/hostess seat. This means you have a few different jobs to juggle at once: preparing the environment (hide your valuables – or display something you’re proud of), welcoming guests as they arrive, making sure you introduce people to each other, encouraging people to make themselves comfortable, offering some refreshments (in the form of media entertainment?), and generally ensuring that everyone has a really great time.

 

Today let’s discuss how to go about doing that. How do you host your online community’s health party? How do you go about making connections among your guests and encouraging new relationships amongst attendees?

 

Join us at 3pm ET today for our #HAchat on Matchmaking in Your Health Community.

We’ll chat about:

- What makes an awesome online community.

- How Health Activists (bloggers, Twitterers, Facebookers, etc) can turn their community into an enjoyable party.

- How to play Matchmaker with those you meet online.

- Challenges you face as a “host/hostess” and health community manager.

- Tips we can all use to improve our online interaction.

- And more!

 

Here’s a link to the Chat room: http://tweetchat.com/room/HAchat – looking forward to chatting with you!

 

 

February 16th, 2012

Talking to Strangers: A Health Activist Perspective

by Amanda

Today we have an important post on a little-discussed topic in our Health Activist community – but one that bears discussing: the darker side of having an online presence – creeps. By putting ourselves out there, online, we open ourselves (and our lives) up to those we seek to connect with. It’s one of the most integral parts of being a Health Activist – providing that genuine face-to-the-name and helps raise awareness and creates relationships between members of your particular patient community. However, just as in real life – and maybe even more so – creeps exist online. People who want to derail the conversation by being inappropriate, commenting on you physically, or simply trolling in an uncomfortable way. Have you run into instances where you felt harassed? We know that most Health Activists are women – some of whom are quite lovely – and unfortunately many people feel it is their place to comment on that. It can be incredibly frustrating and sometimes, down right scary. Today’s post is written by IBD Health Activist Sara Ringer, of Inflamed and Untamed, who has experienced this (especially due to her vlogging). I hope you enjoy the post and think about bringing this conversation up in your health communities. Sara offers some great tips you can share. –Amanda

 

 

Talking to Strangers: A Health Activist Perspective

by Sara Ringer

 

I was always taught not to talk to strangers and here I am talking to thousands of them!

Being a Health Activist means putting yourself out there.  We open up about our weaknesses, strengths, things that make us LOL, and all sorts of things that make us vulnerable with the goal of helping others who struggle with our condition.  Putting yourself out there is a great thing, you are helping many people by sharing your experiences.  Your readers can see themselves in the things you share and in turn they feel a kind of bond and closeness to you.  But how close it too close?

 

I’ve received a lot of wonderful feedback from people who follow my blog and YouTube channel.  Hearing those things are the things that keep me doing what I do.  But I also receive a lot of feedback that is down right creepy and sometimes scary.  A lot of this has come from video blogging.  Not only are you sharing stories and being vulnerable, but you are doing so in front of a camera.  This adds a whole new relationship between you and your community.  They see you right there in front of them, talking to them.  They know what your living room looks like, they know what YOU look like, and after watching your videos they start to feel like they know you too. I imagine this is what celebrities deal with but on a much smaller scale.  People become obsessed with people they don’t even know.

 

Sharing my thoughts and experiences through blogging and video blogging has been almost nothing but a good thing. It has widened my audience and allows me to get things out there in a much more personal way.  But I have also had guys who have told me they love me.  I have guys who follow me on every one of my social networking sites and never fail to throw in a creepy comment about how much they adore me.  I have had random guys who have found me on YouTube write very vulgar things or followers who ask me for my phone number.  The list goes on…

 

So what do you do to protect yourself?


  • Emily from chroniccurve.tumblr.com writes “ I make a point not to create online relationships. By that I mean skype, personal friendships, exchanging addresses or numbers, that type of contact. Why? Because there is no way to know who is truly sitting on the other side of the screen.” She makes a very good point.  You want to be there as much as you can for your audience but you have to know where to draw the line.

 

  • If you encourage your readers to email you, set up a different email account. I learned the hard way to not share my personal email address with my readers.  Recently a very mentally unstable and unhappy person came across my blog and didn’t like what I had to say.  He started emailing me hateful messages numerous times a day and would change his email address so he couldn’t be blocked.  I wasn’t the only one in the community he was threatening but I learned quickly to not share my personal email address.

 

  • Use caution: You might feel after talking to someone for awhile that you know the person and that they can be trusted, thus offering up information about yourself you normally wouldn’t.  This brings us back to “there is no way to know who is truly sitting on the other end of the screen.”

 

  • Know when not to respond. I try to respond to everyone but there are certain things I do not respond to. If it is inappropriate or creepy I usually pass it up.

 

  • Keep in mind the internet is full of all sorts of people. Not everyone is mentally stable, “creepers” do exist, and not everyone can be trusted.

 

Overall you just have to use your best judgement. There have been times when I’ve offered up my phone number or sent out a care package.  I have created some of my best friendships through being a Health Activist. You just have to be careful.   As Health Activists we are passionate about what we do and we want to create a community that is open and safe for everyone. You don’t have to talk on the phone, skype, or send things via snail mail to create meaningful relationships with your audience. With facebook pages, twitter, message boards, and email there are plenty of ways to create relationships with people and offer support in a safe way.

 

 

February 15th, 2012

#HAchat Recap: Not-so-secret Admirers: Health Activists Reveal their Online Crushes

by Caitlin

Last week we talked about the ins and outs of relationships and your health.  Once the relationship starts to blossom, it can take on many different forms.   Friends, boyfriends/girlfriends, caregivers, but all these relationships start the same way…as a crush.  It could be romantic crush (I “like-like” you) or a friend crush (“You’re so cool! Please be my friend”), or even get a little creepy (online stalking! Uh-oh!) but it starts with a crush nonetheless.

So how does this work online?  Do you ever read someone’s blog and just think, “OMG I wish we were friends in real life?”?  Do you get a rush from a new Facebook poke? Do you stalk your crushes on their various social platforms? We know you do, we all do.  Yesterday’s #HAchat we talked about who you’re crushin’ on in the virtual world and what about them you’re into.

 

It turns out that the criteria for internet crushes is pretty similar to real-life ones.  People admire qualities in others that would draw you to them in person, someone who is open and who makes you feel comfortable, someone who is smart and passionate about their work (like all of our Health Activists!) , someone who inspires others and can make you laugh during the toughest time.

 

Lizzmariposa: confidence….always, always, always…inspiring confidence in others, or their children, that they can soar above the clouds…#hachat

Nateosit; T1.2 I love people who are passionate about what they do, who are inclusive, understanding, and help out others #HAchat

Betizuka: T2. I admire their dedication, their courage, their sense of humor, their charisma. #hachat

 

So what makes an internet crush different (other than the fact that you don’t know the person)? Crushing on someone for their internet skills (@sara_ringer) or for the design of their blog, or for promptly responding to emails, tweets, and Facebook posts. It’s a lot of work to stay connected in both the virtual and non-virtual world, and reaching out to people personally is definitely a crush worthy attribute. It shows your followers that you care about them and you want to help each person that you can. Tech skills will get you noticed too, as will your dedication to regularly posting new content.

 

Sara_Ringer: I envy tech savvy people. I see a blog I like and swoon over their skills.#Hachat

Tmana: T1.2 For some, the ability to post daily — it takes me a lot longer to craft a great blog post than it seems to take my “crushes” #hachat

Tmana: T1.2 For others, their access to information (and review devices) before it is common knowledge (or available to purchase) #hachat

 

Internet crushes inspire slightly different feelings than real-life ones though, especially in the health sphere.  Health Activists inspire, give advice, and teach.

Sara_Ringer: It’s a feeling of learning from them. I think to myself “i wish i thought of that” when I see something I like/admire. #HAchat

Lizzmariposa Sometimes, I am more inspired by the folks who just quietly do the things they need to get done, without fanfare… Inner strength #hachat

Lizzmariposa: It’s a feeling of learning from them.  I think to myself “I wish I thought of that” when I see something I like/admire.

Susanmees: I crush on people who seem to just be really ‘good’ – I see people facing extreme challenges and offering me kind words. Amazing. #hachat

 

One of the best parts of crushing on someone is that those feelings make us want to better ourselves. lizzmariposa: “When I am around these folks, I am reminded of… how much potential there is in me, and I forget for a moment I have X illness.”  Think about someone you have a crush on in the real world. You might pick out a cute outfit on a day that you’re going to see them, make sure you do your hair, or just do little things you think they might notice.  It’s just as important to put your best self forward online, and yesterday’s chat provided great tips for making yourself more crush-worthy.  It’s important to bring non-health related stuff into your writing to round out your “voice” and make you more approachable. Similarly, if you can, reaching out to your followers by answering emails, responding to comments, and re-tweeting or tweeting at followers builds your personal network. Sharing those “AHA” and “UGH” moments (@lizzmariposa), as well as your successes and failures, personal bests, and helping to connect others. Vlogs are another great way to make a personal connection with your followers.   Give people something to laugh about. Share. Be open.  And finally, in case you were wondering if anyone’s crushing on you:

Sara_Ringer: Just a reminder to all of us here that you do all these great things. *crushes on you* HAchat

 

 

February 15th, 2012

Online Dating for Patients

by Amanda

Today’s post takes a more literal look at our theme of “Matchmaking Month,” as Sharifa writes about actual matchmaking sites online. As we discussed in last week’s #HAchat – telling someone you’re romantically interested in that you’re living with a health condition – is not something anyone looks forward to. The conversation itself is scary and anticipation of the recipient’s response might be even scarier. When you’re thinking of love and romance – the last thing you want to focus on is the tough challenge of living with a symptoms, treatment, and the weight of self-care. Perhaps this is the exact thought behind the creation of certain dating sites that are especially tailored to patients who are chronically ill. Just as there are sites dedicated to members of certain religious groups or centered around particular hobbies – these patient-dating sites reveal a few of the important facts about each of the members’ lives – just related to their health instead. Let’s look at what these sites aim to accomplish and how they compare and contrast to our own patient-to-patient health communities. –Amanda

 

Finding Love Online as Patients

by Sharifa Simon-Roberts

 

Yesterday was Valentine’s Day! At the mere sight of those words, I am certain many people’s minds wander to thoughts of hearts, roses, stuffed animals, chocolate, jewelry, etc. – physical manifestations of romance or love or infatuation, whatever the case maybe.

In this post, I will not be adopting that angle. I refuse to dwell on the commercial idealistic aspect of the day. Instead, I invite you to explore with me the world of matchmaking specifically the realm created for those who are ill and thus feel challenged when it comes to dating, making special connections and finding love.

You have seen this phrase on a television commercial in the past probably: “1 in 5 new relationships begin on an online dating site.”  I can not help but wonder if this statistic is reflective of those who are chronically ill as well. Given the rise of websites such as Ostodate, Prescription4Love and Whispers4u, I suspect the number might be higher for those who feel constrained by their disease/s.

‘I have not heard of these websites. What exactly are these websites?’  Already, I can sense questions forming. Before I take any, let me tell you how I would describe these sites and then we can move on from there. These are all online dating and/or friendship sites for people who suffer from certain diseases, who have distinct health ailments and/or who are interested in the aforementioned.

Someone who is not afflicted with an illness may inquire how these websites are different from the traditional set, for example Match.com and eHarmony? To a person who considers himself/herself healthy the majority of the time, the distinctions may not be very clear. However, they are present. Here, are some of the unique qualities of dating websites targeted at people with health conditions/ illnesses offer various communities and what an asset they are to their users.

 

  1. To start with, websites that cater to people with health conditions eliminate the need for the dreaded ‘awkward conversation’ of revealing an illness to another person.
  2. Users of these sites are more likely to find support, rather than rejection. I admit, that sentence sounds harsh. After researching this topic, I have to say it is an unfortunate but because it is a real fear for those living with health conditions – this is a comforting quality.
  3. By dating or befriending someone else who is familiar with the disease, the educating phase isn’t necessary. The majority of stereotypes, misconceptions, and stigma that could potentially come into play are removed. Interactions can, instead, focus around more in-depth conversation.
  4. These websites offer reassurance to users as they know there is a place where they can possibly find love without judgment, and through this, the health condition is no longer a defining component of their profile. It offers an even playing field for those on the site.

 

It’s important to keep in mind that many people truly are hesitant about letting others know they are sick for a variety of reasons. There are enough things to worry about when beginning a new relationship – without adding apprehension about revealing your condition to others. For the same reasons many patients go online to find a community of those who understand – these sites aim to accomplish the same thing.

 

Are you in this situation or do you know someone who has been? What do you think of the idea of condition-specific dating sites? Share your thoughts with us.

I think this is a fitting conclusion to today’s post: We all yearn to love/ find love and human connection regardless of our perceived individual boundaries.

Happy Matchmaking Month all.

 

February 14th, 2012

Today’s #HAchat: Health Activist Crushes

by Amanda

Ever come across someone’s work on the web that you just admire so much that you wish you were friends with them offline too? Therein lies the elusive “internet crush.” Since Health Activists are constantly on the web researching, reading, and absorbing – we know there have got to be some fellow bloggers, tweeters, Facebook users, or just internet presences that you totally wish you could hang out with. In honor of Valentine’s Day – this will be today’s Health Activist Tweetchat topic. It’s a little teeny-bopper but still tied to our mission of empowering Health Activists because we’re honing-in on what makes people so effective online. (It’s Social Media Week after all!)

 

Join us at 3pm ET – to discuss these topics:

- What is an internet/online/Health Activist “crush”? Do you have another word for it? How do you define it?

- Who are your internet crushes (or Health Activist crushes if they are health leaders) and what qualities do they have that you love?

- Have you met them? What would you ask them or talk about if you could meet?

- Let’s look at ourselves – what are your best qualities? What do you think attracts people to your presence?

- What’s something we can all look for when trying to find people online to inspire us? What’s something we can all try to bring our personalities into our Health Activism?

 

It’s going to be a fun chat!

We’ll see you there: http://tweetchat.com/room/HAchat

 

 

February 8th, 2012

#HAchat Recap: Love and Other Drugs

by Caitlin

The start of a new relationship is the most exciting part.  Butterflies flutter in your stomach, your heart lifts when you see a call or text message, you fluctuate between excitement and nervousness while getting ready for a date.  But what about the anxiety that comes from deciding how to tell someone you’re starting to care about that you’re sick? How does a diagnosis change a long-term relationship?  How do you go through all of this and still love yourself?  These are some of the topics that we touched on in this week’s HAChat.

Loving yourself

The most important relationship you have is with yourself, especially when it comes to managing your health. Learning to deal with a condition has a direct impact on your self esteem, and therefore your relationships with others. Relationships with one’s own health vary depending on how long one has been dealing with that disease.  As you’re learning how your condition will affect your life, the relationship tends to be terrible, full of disappointment and betrayal.  Then things might slowly begin to shift, develop into what @TiffanyAndLupus: describes as “a love/hate relationship.” Acceptance is a gradual process that comes with time, though the love/hate relationship may remain.  Overall, @TiffanyAndLupus: Self-esteem issues usually go hand in hand with chronic illness. It’s a challenge I personally have daily.

So the question is, how do you stay on the “love” side of the love/hate relationship? Everyone has different coping mechanisms. Finding understanding and support is important for many people, and for our Health Activists, reaching out to support others is equally important.  Connecting to others that understand what you’re going through is key for bouncing back during tough times. Some say that a sense of humor helps.  It’s also important to understand and respect yourself, to know that illness is not your fault, to learn what taking care of yourself really means, and to indulge in the little things that will make each day a little better.

Loving others

Romantic relationships are another story. Now you have to balance your own needs with someone else’s.  How do you go about that? When do you tell someone about your condition?  As @mandylipka tweeted yesterday:  ”It’s like ripping off a band-aid. But the fear of being judged or losing the person is crushing.”

For invisible illnesses it’s both easier and more difficult to disclose a condition. While invisible illnesses allow you to more or less choose when to tell someone, they might not understand what being sick means to you.  Visible illnesses take that decision from you.

@Joltdude Usually my condition brings itself out, the tubing and bruises are a dead giveaway

@joltdude On the relationship front, disclosure cn break “or sometimes make” a relationship.. sum R freaked w/ visible @Medgadget & such

So where do you find the courage to rip the band aid off?  How do you know if it’s the right time? How much do you tell them? Unfortunately, there’s no handbook to tell you exactly the right time, and it seems so dependent on the person, the relationship, and the condition.

Longterm relationships are different. In the intro to the movie 50/50, 27 year old Adam is diagnosed with a rare form of spinal cancer.  He and his girlfriend, Rachel, have been together for some time, but Adam still gives her an “out” when he is first diagnosed. He understands that it might be too much and doesn’t want her to bail during his treatment, which she sadly does. This is an unfortunately real scenario.  TiffanyAndLupus T2: I’ve heard so many real life stories of those who are chronically ill & lose their loved ones because of the complications. #HAchat -3:28 PM.   No, it doesn’t state anywhere in the wedding vows that “if you get too sick I’m allowed to quit loving & caring for you,” but that doesn’t mean that this doesn’t happen.  Sometimes it seems that love just isn’t enough. Illness can wear on you and your partner. You may no longer be able to control all the variables you need to stay healthy.  Finances can become a huge source of anxiety.  Ourchronicpain said, ”I think Finances are a big issue of illness and relationships. Someone new, or current, may see that illness as a burden.”  It is a huge disappointment when friends, family and significant others don’t play the roles that you envision for them, or when they don’t understand what you’re going through. But it’s important in managing your health to learn what you can and cannot expect from others, and to seek support elsewhere if necessary.  As kimmieCollas shared, “Because of other issues, my blood relatives are no longer in my life. My “chosen” family is supportive.”

Setting up boundaries is one way to maintain balance in any relationship.  Obviously your caregiver is going to need information on your health on a day-to-day basis, but not everyone in your life will and it might not be best for your relationships with friends and family to provide so many details about your condition.  The key is figuring out what works for you and yours.  ArtAppleADay I have friends who know but I don’t talk about AS or my health to. It is nice to find some balance AND a place to get away from it. #hachat -3:42 PM Feb 7th, 2012.  At the same time, as TiffanyAndLupus put it, “Honesty is vital. By sugar-coating how my illness made me feel daily; I only confused my friends/family to it’s severity.”

Finally, for all the Rachel’s out there, there are a lot of heroes as well; caregivers and friends that you know you can always rely on even when your health gets bad. It’s important to remember that though your condition might change your relationships, it doesn’t mean that you aren’t deserving of love in your life, or that you won’t find it.

NateOsit My partner is very understanding. It can be a bit of a drag, but being open can lead to deeper relationship. #HAchat

ArtAppleADay T2: Been married 13 years – My hubby has learned a lot & romance is a bit different than before diagnosis – not as spontaneous. #hachat

flywithhope T2 My relationship with my husband is more of a care giver/care recipient. But there is a lot of love. #HAchat

@TiffanyAndLupus: Beautiful relationships can bloom despite illness. Dont let fear stop you from making new friends & be honest. #HAchat


Who’s your Valentine/caregiver/champion this year and how have they helped you in managing your condition? How do you keep up with relationships and your condition? Get a conversation going in your community!