A Magical Mystical Lupus Tour, or Down the Lupus Rabbit Hole and Back Again.

When you are diagnosed with an illness as confusing and overwhelming as Lupus, your options seem limited. Indeed, just understanding Lupus itself can be somewhat confusing.

You know you have an Auto Immune Disease, so why do you see a Rheumatologist, rather than an Immunologist, a Haematologist or indeed, any other “ologist” depending on your symptoms? In fact do you even comprehend what an Auto Immune Disease is? Do you feel rather like Alice who lifted the bottle when told to “Drink Me”, to find herself shrinking into oblivion. Having been diagnosed with Lupus a number of years ago, I trusted my GP to do the best for me in terms of referrals and monitoring. In short, I followed the white rabbit down that hole into a nightmare non-wonderland of ignorance, confusion and depression.

WRONG! Educating yourself about your condition and seeking some form of support is a life line. Doctors can get complacent, Interns can be inexperienced, and even Specialists sometimes have difficulty maintaining a seamless treatment regime.  You need to understand what Lupus is, in order to know what Lupus may throw your way. This in itself can be a terrifying journey, as you delve into the symptoms and complications of Lupus, both Discoid and SLE. Understanding that Lupus is called “The great Imitator” may help you to know that many things can be a sign of Lupus, but how to know when to seek help, or where to look for this help can be a struggle for a new “Lupie”. The fear of developing some of the many complications, and suddenly finding yourself taking a cornucopia of unfamiliar drugs, some with rather unsavoury side effects is enough to confuse even the most grounded of persons. Don’t nibble at that mushroom without knowing what it will do to you!

Educating yourself about Lupus is probably the most sensible thing you can do, followed closely by allying yourself to a Support Network of some sort. This may be family or friends, but the chances are, they are just as confused, or more so than you are.  So – what do you do for help? Indeed where do you go for help? Sometime Google can be your enemy, the Tweedle Dum and Tweedle Dee of conflicting advice depending on what sites you land on. The fear factor on some sites can be terrifying.

Learn to ignore these. Also the Quackery encountered on the Internet is scary to say the least. “Eye of newt and wing of bat” has often come to mind when I have delved into sites promoted by those I refer to as “Quackery Dackery Docs”. The Mad hatter has nothing on those guys. In fact the Caterpillar’s hookah was probably less toxic than some of the stuff they peddle. Take every site with a grain of salt, research, educate yourself, and then research again. You are, after all, looking for support, and reliable information, not to spend your well earned dollars on “Smoke and Mirrors” treatments and cures. Ask your General Practitioner for any contacts he may have for Support Groups.  Chances are, unless he already has Lupus Patients, he will probably not have a clue. Unfortunately this is often where some of us should tell our GP’s where to go, in a kindly way of course.

I favour this type of GP fading into the oblivion of his own non committal, here we go again Cheshire Cat smile. You can try the Hospitals, but often end up going round in circles as the Inquiries Desk asks Loooo WHAT? And what Department would that be? Off with their Heads I say. Ask your treating Specialist if he knows of any Support Groups. A good Specialist not only understands your symptoms, but will also understand the impact Lupus has on your family, friends, job, study, and life in general. However sometimes Specialists are more concerned with your disease than your state of mind, or your “Need to Know”.

If this is the case, think laterally. Search the Internet Again! It is truly Wonderland. As long as you can learn to correctly interpret the types of sites you find you will glean a wealth of useful information. Use the Words Lupus, Lupus Support and Lupus information. Add the words Foundation, Association or Trust. Look for .org in websites. Look at sites that do NOT promise a Cure. Make sure the sites you access are not selling Supplements, Literature, Tapes or DVDS promising a CURE. Check the advertisements on sites. Search Social Networks. Put up Flyers on your community billboards, and in doctors surgeries if you can.

My lifeline ended up being, of all places, FaceBook, when I stumbled across Lupus Association Queensland.

This has given me the special gift of a worldwide Lupus Family, and the regular meetings have helped me in my transition from being a Lupus Sufferer, to that of a Person with Lupus. The difference is enormous.

A Lupus Sufferer is just that, a sufferer.A Person with Lupus is someone informed and comfortable about their disease, someone who knows the options available, and has the strength and knowledge to query treatments, educate themselves and others, and to insist on their right to be informed and respected as an individual. In short, A Person with Lupus is a person in control

The social aspect of a support group allows you to share your fears and feeling in a non-judgmental setting, which is a difficult thing to do with your family and friends.  Also the opportunity to make friends with someone who KNOWS what you are talking about, does not judge, and does not indulge in “pity parties” is probably one of the best self help treatments you can indulge yourself with. The ability to speak to empathetic persons in the same situation, albeit of varying severity, allows a little more objectivity.  It also allows you to see that people can and do function with Lupus.

Forget therapy groups, shopping, manicures, or massages. Get yourself a circle of Magical Mystical Lupus Friends, who can support, listen, advise, and empathise. They have been there and done that. And will not judge you for it. This is a truly heady experience, and to my mind should be listed as an approved Medicare Treatment.

Having a good support group will alter your mind set, help you accept Lupus and your treatments,  allow you to vent, set your perspective straight, and allow you to use your experiences with Lupus in a positive and empowering way, letting you out of the rabbit hole, and back to your (near) normal life.


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