Social Networking

 

We love being connected with our readers! Since we have added those “handy dandy” sharing buttons at the top of every article, we have noticed our readers have shared our articles, posted them on their personal profiles and more. We can not thank you enough for sharing this site with your friends and family. Social Networking is more and more popular each day, and we like to stay connected! We can use technology as a tool to help each other and build a community.

We have listed below ButYouDontLookSick.com profile pages on some of the most popular bookmarking and social networking sites. Feel free to add us!

I must admit, sometimes feel quite overwhelmed by social media sites. I am busy enough with my health, my family and keeping up with ButYouDontLookSick.com, but I do like the idea of being involved on a more personal level with my readers. Do you like/ dislike social networking sites? Do you blog?

  • CodyCat

    I’m with you Veronica. I woke up with it, too. Went to bed completely healthy after a four-performance weekend in the last great play I was in. Woke up the next morning and couldn’t lift my head off the pillow. It felt like I’d fallen down a flight of stairs. That was the end of one life and the beginning of another. I’m sorry you’re so young to have this already. I was in my 50s so I’m grateful I had many years of fun and frolic pre-FM. Stay in touch! I’m Christine Cody on Facebook.

  • I actually found you today as a result of a post I made from my blog on FB coming clean about what’s actually been going on in my life and asking for help. This was very hard for me to do but necessary. I’m hoping to get some aid to get treatments I need. She sent me your link about the spoons. It’s now posted on my page. You did an excellent job explaining it. I, too, have a best friend from high school who very recently said to me through email- I have a hard time believing you are that sick. It didn’t hurt me, as I understand that if you don’t wear the shoes, comprehension is limited. But I did respond-we’ve only seen each other a couple times in the last 3 years. That’s something right!
    Peace & Love~ Kim

  • mgkimple

    I personally am overwhelmed by ‘social networking.’ Maybe it takes a different mindset, but as far as I am concerned it is just one more thing. In order to survive I am having to simplify my life. I have a blog, but I found that I was not writing in it even once a month, so it is more like a collection of articles. If I do that I can’t do something else. And it is not just doing stuff– managing stuff it is harder and harder. Even if you have the money, hiring people is a job in itself.

  • jeremiah goska

    hi i am happy to have found this site i wood like to no how i become a spoonie you can find me on facebook under jeremiah goska just tell me ware you found me on please

  • Meadow

    And one more thing…I saw my nerologist a couple days ago. She told me there’s a good chance we could be narrowing one of my many things down to M.S. I asked her if she could email me the details of our visit and the plan for more tests in case I forgot.
    I shared with her that online was actually the best way for people to reach me. I told her I was on FB often and my story of how I “outed” myself as a spoonie and its given me the opportunity to feel good about being of service to others and it’s given me a lot of support as well. In finding spoonies amung people I’ve know for years and have hidden their hidden illness from the outside world we have really formed new levels of relationships. My doctor (who smiled when I said I was a proud spoonie hehe) looked me in the eyes and said “you are a very courageous woman for doing what you’ve done…you really have a lot of courage and I think what you are doing is wonderful” and she hugged me! Just had to share! : )

  • Meadow

    I am so grateful for FB. It is my biggest forum for support. I don’t have a lot of friends where I live now and Im a single Mom who is homebound due to illness most of the time now. I have a new host of health issues going on on top of my health issues I’ve already had. So many people ask how i am doing and what is going on with me. It makes it so much easier for me to just post open letters to everyone. I decided to “out” myself as a spoonie about a year and a half ago now. I told what I was afraid and often ashamed to share and encouraged others to come out too. Since then I have found a whole slew of spoonies and we get to support each other. I have three who only private message me because they are still afraid to come out even to their families with their illnesses. One has cancer and four other illnesses that he has not shared with anyone but me. Because it’s an open forum (not specific to people with illness) it invites people who feel alone to know they are not alone. I would not of found these spoonies without FB and many would possibly still be suffering alone. They help me to get through it. Post on my wall when they are having a good or bad spoon day. My friends now know far and close what I go through and what being a spoonie means. I post the site twice a month faithfully so people can be informed of how they can support their friends and family or get the support and laughter they need. FB has also been a way for me to easily join other support groups. I have met a lot of new friends this way. I even met one of my closest friends who I have actually never met face to face, in Yoville! I was really suffering from my PTSD and didn’t have the courage to go out and interract with people face to face. I met her at a “yard sale” haha and she turned out to be a daughter of a spoonie and a huge loving and inspiring support for me.
    I don’t usually have the energy to go to various sites for support and with my brain issues some days it’s really hard for me to keep them straight. My homepage is my second home. It’s my connection to the outside world. Its a way I can feel I make a difference or just vent about how my meds weren’t covered this time around and I had to wait for special approval! I am so grateful for FB for making my life so much easier. So I am a supporter for sure. It’s a great way to get info out to people at the same time and for them to quickly respond because that’s what they are used to doing all day. Not many places you can feel comfortable sharing everything or nothing at all and people hitting “like” haha!

  • Veronica G

    I feel like I am repeating what has already been said over & over here today, but as I sit here with tears streaming down my face I feel like I have finally found my home. I woke up one day in July 2010 unable to get out of bed & have been struggling ever since. My current dx is Fibro & Sacroiliac Joint dysfunction although I truly believe it is more auto immune. I have tested positive for Lupus & it runs in my family. I am utterly miserable right now. I take 7 different medications, not counting the pain meds, 3x/day. I am only 34. I can barely walk 3 blocks or up a flight of stairs, this is not what I want for my life. I am also fighting the insurance company to pay my ST & LTD claims along with SSID. This has opened my eyes. I always try to look my best & put on a happy face. No more of that, the gloves come off.

  • Jannice Genaux

    I am on FaceBook all the time. Right now, it’s the way I stay in contact with the outside world, family and friends. I’m basically homebound except for physical therapy and doctor appts. It also lets me meet new friends from around the world. I welcome friend requests as I believe you can never have too many people to talk to, lol.

    You can find me on FaceBook under Jannice Schairer Genaux.

  • Erin Cacciatore

    I live in the dizzy world of vestibular disorders. The impact on my life and that on my family has been unbelievable. I literally went to bed normal one night and woke-up a little dizzy the next day. By that afternoon I was in the emergency room. I took numerous specialists and tests to determine my disorder, six months on the only medication available. I was one of the few that the medication did not have much positive effect. I struggle with extreme vertigo attacks that last as long as eight to twenty-four hours and am utterly incapacitated when they occur. I cannot watch TV, read, drive, talk on the phone, etc. I also never know when I will have the attacks. I can go days without one, then I can have them several days in a row. On the outside I look perfectly normal, but on bad days I am not seen because I cannot make it out of the house. I true to stay as engaged as possible during times when attacks subside and try to be as spontaneous as possible. I have lost friends who could not understand, but the support network of friends and I family I have now are incredibly amazing. There are still moments of grief for the life I once lived and that I can no longer work, and other things that I can no longer do. I try to stay as positive as possible because I do not want my life to be seen as tragic – but one in which I chose to live despite my circumstances.

    Thank you for having this wonderful website!

    I am also on Facebook under the name Giada Bonzo Montalban.

  • Julie VanNorman

    I like the social networking sites. This website has helped me so much in just a few days of finding you through another Pain Sufferer. Everyone here has been so wonderful..I feel as if I am not alone in this any longer. I have been friended by many on my facebook. These lovely people have been kind, helpful and understanding just to name a few great things.
    In the; “World of Pain”, this is such a wonderful tool!
    Thank you so much!