I cannot stress enough the importance of why lupus sufferers should network. Lupus is such an isolating disease because it affects your quality of life. Lupus attacks its own tissues, causing damage or potential damage to internal and external organ systems.
Joint and muscle pain are major complaints among the lupus community. Not being able to move around freely as you used to is a real bummer. Chronic fatigue is another complaint as some lupus sufferers can barely get out of bed to start their day.
These things can really bring about depression, especially in the summer months when it seems as though everyone is having a great time except you. You can no longer socialize as often because a flare up in symptoms are so unpredictable.
This is the story of my life since I was diagnosed with SLE (Systemic Lupus Erythematosus) in 2004. Thankfully, I network yearly if possible with my local lupus chapter. I have on occasion volunteered doing office work.
For those newly diagnosed, read as much as you can about lupus. Definitely stay in touch with your specialist as they can provide resources. Lupus groups are great as you can share stories and make new friends, at least those who understand first hand what you're going through.
Once you're proactive about lupus, you'll find that there are so many who share the same experiences if not worse. Getting involved for the cause of lupus awareness also gives you a sense of empowerment. Try participating in a lupus walk event and you'll see what I mean.
Networking with other lupus sufferers is healing, if just for a moment. There is a saying that laughter is a good medicine. No one should have to suffer from lupus alone, especially when there are resources and opportunities available.
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Filed under: Lupus