Sometimes when dealing with chronic illness, you’re inner you says FIGHT, the outer you don’t know how or where to begin. It can all be a tad bit overwhelming, and at times confusing. Below are my top 5 tips to FIGHTING LIKE A GIRL FOR LUPUS!
First we have to acknowledge that we have an illness before we can take a step in any direction. Though symptoms of Lupus differ, people with them are united by the denial, anger, fear, hope, and acceptance and other feelings they bring. At diagnosis, feelings of grief and loss had consumed me. I felt that Lupus was restricting me from the things I enjoyed; no longer able to attend cabarets (because of the loud music and the migraines), it was summer, and I was unable to attend barbecues, crab feasts, or hang out at the beach/park with my children and grandson. I felt inadequate, isolated, and withdrawn from family, friends, and the MC/SC community. A month into my diagnosis, I took to YouTube and posted a video. Instantly, when I acknowledged my disease, and stop acting sick, people stopped treating me like I was sick! I buried my grief-stricken feelings, and haven’t looked back!
Ask yourself a question. Are YOU ready to “Fight Like A Girl”? By claiming your power you pledge to stand strong and fight against Lupus. You declare that you have a power within that will help prevail against weakness and that if by chance we fall while struggling to stand we will not feel guilty but reach out to our Lupie sistas & brothers for help! I pledge to do all this and believe we can because we have claimed our power!
We are not alone! There are 1.5 million lupus survivors in the United States. Facebook, Twitter, Instagram, and LinkedIn have hundreds of different groups and pages dedicated to raising awareness and support for Lupus. On Facebook, you can do a search (in the search box) for the keyword Lupus. A list of Lupus support groups & pages should appear. On Twitter and Instagram the way to find someone is to search for a hashtag mentioned in a tweet/picture post. All the people who have used those hashtags will appear-you simply “follow” and most will “follow back” Some of the common hastags to search for are: #lupus, #LupusAwareness, #spoonie, #butterfly, #ChronicIllness, Together we share our pains and sorrows, our joys and pleasures. Whatever we experience we can learn to share it and fight it together!
Whenever I get a new symptom, like a rash or chest pain, I say to myself, “Its Mister (aka “my Lupus”) begging for attention. No need to worry. No need to check it out. It’ll go away in a few days.” At times, this is probably true. But more often, a new symptom needs to be evaluated and perhaps treated so it doesn’t become a life-threatening event. I will post on one of the support groups that I belong too and/or I will turn to Google. It’s imperative to our health that we become “hands-on” patients and educate ourselves. As patients we cannot just depend on our doctor to tell us everything. We have a responsibility to our health and well-being to do our own research! Find out the current medical news, keep a food/illness diary (this helps to discover what foods trigger symptoms-check out this app), look up alternative medicines, talk to other patients and find out what works for them. Some great Websites to visit are: Lupus Foundation of America, WebMD, MayoClinic.com, John Hopkins Lupus Center, Alliance for Lupus, NIH, and Life with Lupus.
You’ve heard it before: “It takes a village”, “Two heads are better than one”, Each one can reach one! So reach out and help someone else begin the journey to overcoming Lupus. It can be scary, but 9 out of 10 times, there is someone who can relate and/or has experienced something similar to what you are dealing with. Together we can stand strong!