The Lupus Community

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Many of us have friends, some life long and others shorter term. One of the things that bind us as friends, is a commonality of something. Call it a community of sorts. I have several of these communites in my life. The one I am going to talk about today is the Lupus Community.

I have lupus. This can be a devastating thing that can overwhelm you when you are first diagnosed, and leave you shell shocked for some time. After the intial shock wears off, the knowledge phase kicks in, namely, where you research and learn more about this disease and its effects on your life and family.

It is during this phase that many of us have found a surprising community of folks who have been there, done that and now help others just like themselves. I call this the Lupus Community.

Now, to be certain, you would think that to be great friends would require seeing each other daily, talking on the phone, and sharing life’s events. Yes, that is true. In this community though, we do all of the above with tthe exception of seeing each other in person. We “see” each other online.

In this community, we can share things that we would not tell others. We can be honest, and discuss the way this disease has affected our life, warts and all. We can be brutal in our descriptions of certain manifestations of the disease and feel free to express our innermost feelings without fear of judgment or belittling that many “normals” sometimes do inadvertantly. If we are depressed, we can tell others and know that they will lift us up and help us to get through it. It is a community of others who are dealing with many of the same issues that are difficult to describe to those who are not ill. We laugh at our jokes and inadequacies, we cry when we lose a friend, we rejoice in remission, and we commiserate in our pain. We share links with information and discuss various clinical trials and developments as well as improvements in care and even good doctors versus bad doctors.

In the end, it is a community of caring, intelligent individuals who share a commonality of an incurable disease and who are living with it each and every day. When those closest to us get tired of hearing our complaints, this is the community that will help us and bolster us as we survive each day and keep the wolf at bay. It is a sounding board for us to vent and scream, to cry and laugh, to share and care. We cross all socioeconomic boundaries, all races and religions, and all countries across the world. We speak different languages and have different colors of skin. Underneath it all, though, we share the wolf. We fight it as one, and never give up on each other. We are men and women who share this unique bond. We are young and old, we are survivors one and all.

I am blessed to have found this community and to share it whenever I can. Yes, I may have in incurable disease called lupus, but, and here is the difference, lupus does not have me! I am a lupus survivor! I share this distinction with many millions earthwide! We will fight until our last breath each of us! If you are newly diagnosed, please join in the lupus family and you will feel the love and caring that I have experienced…

See, I am indeed blessed…

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2 thoughts on “The Lupus Community

  1. Cathy Wratten

    Thankyou for your lovely comments they are so true, Lupus sucks but the friends we make through it are wonderful

    • That is so true Cathy! I have a few really precious friends that I have met through the Lupus Community! We understand each other and do not judge! It is a blessing for sure…

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