View Full Version : Newly Diagnosed.. and NO one understands

12-10-2005, 08:58 PM
Hi all,

I am so happy to find this site - and the many words of encouragement. It gives me a great sense of optomism that there are others out there who can understand what its like to deal with Lupus on a day to day basis.

I was diagnosed only a few days ago (SLE), after 2 years of severe fatigue and even weirder, vascular headaches. I chronicled some of it on my blog (http://prchick.blogspot.com) but for the most part, its been a battle. Im a single mom, and a career woman - so needless to say a lot of demands on my time.

Nonetheless, I just dont feel like my family "gets it".. I know sharing information with them is the best bet for them to understand the how, when, where it hits.. but for some reason it just doesnt click. Any suggestions?



12-11-2005, 07:57 AM
Welcome Chal. You are right about finding encouragement and support here. I think you are right that it is hard for family and friends to understand what you are going through. There is a really good website: www.butyoudontlooksick.com. The author has what she calls a spoon theory and it is a way to explain to others what it is like everyday to live with lupus or any other debilitating disease. I have printed this out and given it to a lot of my family and a few of my close friends.

Take care and I am glad you are here.

12-11-2005, 01:13 PM
Welcome Chal!

I know what you mean about your family not getting "it" and being a career woman. I've been going to a rheumatologist for the past 5 yrs but was finally diagnosed with SLE in July. I started having seizures in April and then by the time my rheumy got back from vacation, could barely do my hr commute each day to work. She did a ton of tests and finally found I have CNS vasculitis and had to start chemo. During that time I was training for a new job, flying back and forth from Colo to Tempe AZ each week and doing chemo once a month!

This board is great support and SaySusie is very knowledgeable. I'm sure you will find you are among those who completely get "it" and can help support you!

12-12-2005, 02:54 AM
Hi and Welcome.
Its a long battle for diagnosis and recognition in many areas. I am from the UK and with my nursing background I was not taken seriously for about 2 years. Now I have been diagnosed for 2 years, have medical retirement from work and am free from the stresses of life. Its time this illness was more widely understood.