This month is the 5 year anniversary of ButYouDontLookSick.com!!

I’m not an old timer like Wendy…I only joined ButYouDontLookSick.com on July 3, 2005. Since then, checking the message boards has been a daily activity – if not more than once a day – or an entire afternoon or evening!

I don’t even remember how I got to ButYouDontLookSick.com. I search on my illnesses quite often – just to see if anything new pops up, and apparently ButYouDontLookSick.com did on that fateful day. I do remember finding the message boards and the Spoon Theory and spending a great deal of time reading the whole site that day!
I also remember being impressed that this woman with Lupus – had enough energy and creativity to create a place where others with such diverse illnesses could find common ground – and how SMART it was to include all invisible illnesses – not just Lupus. So many times I’ve written, “I don’t have what you’ve been diagnosed with, but I do have…” and continued on with a similar situation and how I’ve handled it. I did it just today.
I have posted regularly, espousing the experience of being diagnosed with an invisible illness for 13 years now. I’m overjoyed that my experience has been able to be put to use and to actually help individuals that are newly suffering or need a boost in how to cope with having an invisible illness. It’s a wonderful feeling to receive a note from a member that what you said helped them. I’ve received several over the last three years and I cherish each and every note.
When in college, I studied Psychology with the intention of becoming a school counselor. However, graduate school didn’t seem appealing and I sort of drifted on in life. In 1995 – just 8 months prior to my wedding, I was diagnosed with Autoimmune Hepatitis – something that was so rare at the time that we couldn’t find any information on it – not even on the new wide world web. The next few years I managed my illness, was diagnosed with another autoimmune illness, and in 2001 I became too sick to work. My disability was approved by SSA in 2003 – just 5 months after we moved in with my parents due to my health concerns and my mother’s health concerns. I’m not just someone with an invisible illness, I’m a caregiver too. But I’m fortunate that I have truly had support all along the way – so many with these illnesses haven’t.
When I started posting on the message boards, I immediately began relating my experience, empathizing, sympathizing with the other members and learning a great deal about other illnesses. I soon found that when I wasn’t on the boards, I was talking about The Spoon Theory, handing out the spoon pins that we used to have and telling anyone that I met that there was this great, positive, supportive place for all of us. It was a place that wasn’t like the other ‘support’ websites. This was for everyone – not just those with ‘your’ disease, and it was upbeat and we were all friends and comrades in the one cause – coping with invisible illness whether that be Lupus, the toxic fatigue that we all face, the brain fog, the unexplained pain in our bodies, or some of the more complicated illnesses.
I attended a Rally in Washington DC (my home town) for support of May 2007 as National Autoimmune Awareness Month. I handed out ButYouDontLookSick.com “pass along” cards with the website info like crazy. I also saw how there were so many without invisible diseases were unaware of what was happening in our lifetime. The rally was attended mostly by those suffering with autoimmune diseases. I did meet a gentleman who is the director of autoimmune research at Johns Hopkins. He told me something that day that has never left me He said, “Those of you with the support websites and message boards do work just like I do. But your work is more important – while I try to work on things that take years to figure out, you on the message boards and support websites are on the front lines, helping people cope day to day.” At that moment, I was so honored to be a ‘Spoonie”.
Because I’m a caregiver, I’m an advocate when my mother is in true need. I ask the tough questions, prepare for the future, and make sure she gets what she needs. I kept thinking if only each one of us on the boards had one of those. Well, I can’t check medications for each and every member, but I can share my experience of how I handle numerous medications for my mom and me. I can’t update symptom journals for each member, but I can share what worked for me when I was sick and undiagnosed. I can’t go to each doctor appt, but I can share what I believe each person should expect from a good doc and rant and rave with the not so rare member that got shafted with an uncaring doctor. I can reach out and touch so many on these boards and offer a spoon, a hug, and hope.
I have found that I am able to help by moderating the boards, by constantly reminding Christine our fearless founder and Wendy our fearless Admin that they are not superhuman and that when ever they need help – I’m ready and willing. I was fortunate enough to actually help Christine out by updating the Rules and Regulations for the message boards. I’ve written an article and am in the process of writing some others. Fortunately, we all supremely understand that we are sick and things do take time!
My cup runneth over too! I receive so much from these people. I too have bad days, and I post about them and I receive hugs and spoons and lots of love. I need help – yes, even the great and powerful NannySpoons needs help now and then, and I receive it from the people that have seen it all. The friends that I have made on this board are for life I believe. Together, we all find a way to cope, to laugh, to have fun. As I stated previously, I also receive thank you notes. They touch my soul and let me know that I no longer have a job since I’m disabled, but that my new career as caregiver and advocate is the right choice for me.
It gives meaning to having an invisible disease for 13 years. Prior to 1995 when people asked me what I did, I said receptionist, supervisor. In 2003 when people asked me what I did I said I was disabled and could not work. Since 2005, when people ask me what I do I say I’m disabled, a caregiver and an advocate for those with invisible illnesses.
Here – would you like a card with the link to the website, message boards and to the Spoon Theory?
Essay written by Linda Kaserman (she joined our site 7/3/05) © butyoudontlooksick.com