I am writing this letter on behalf of everyone who is suffering from Lupus in Canada. And I am angry! Lupus is an invisible illness, but we are not  and we have been “invisible”for far too long!

Lupus is an autoimmune disease that causes the body to attack itself, including your brain, heart, lungs, kidneys, eyes, joints, nothing is exempt from this . As well as, the side effects of taking such toxic drugs to “manage” our symptoms on a long term basis also has its own ramifications.

Managing our symptoms does not improve our quality of life. I can do one thing a day. That’s it, one thing. That’s all I have the energy for. If I happen to go anywhere, I have a week of recovery after. This disease is robbing people of their lives  long before anyone dies of kidney failure or lung collapse.

I cry when I read the things that people write. It is heart breaking and for the 34 years that I have been “managing” my symptoms it is only in the last decade that we have been able to connect with each other the way we do now. So, at our lowest we know that we are not alone in this fight. 

We are warriors. We are warriors because we get out bed and deal with insurance companies, CPP, the on average 6-8 doctors we all have to see to help Us “manage” our symptoms, when the your hair hurts. We are warriors, because we book and go to our appointments, when we can’t take a step without pain. When we have “brain fog” so badly we forget words, forget what we are saying in the middle of our sentences, forget crucial doctor appointments and tests, forget where we are.  We are warriors because we smile and say we are “fine “ When it hurts to breathe, when we can’t leave the house without a pharmacy in our purses and a foldable cane. We are warriors because as well as lupus each patient on average has another 4-5 other illnesses that they are dealing with like, arthritis, Raynauds, Sjogrens, depression, chronic fatigue and many others..

We are warriors because daily, we deal with pain and things the average person could not.

My words alone can not capture the  pain, the loneliness, the devastation of lupus. And so, Mr. Prime Minister,  and everyone else I invite you to visit my Instagram account @learn_about_lupus and also Facebook @learn about lupus and just look at the pictures and read some of the heartbreaking stories about how horrible it is to live with this debilitating invisible disease.

And despite all of this, there has been one drug advancement in 50 years!

This is not ok with us! We need a cure! We need better drugs and support programs and more money put into Lupus research and awareness.

Why is it that President Trump can allocate 19 million to Lupus research and awareness and the only thing I could not find any money donated by  Canada to Lupus research whatsoever. This is not acceptable! 

We are tired, we are tired of being judged by people because no one has even heard of Lupus! We are tired of being looked down on because working gets harder and harder for us as the years go on and our coworkers and employers don’t understand! I, myself, had to file a Human Rights complaint against my employer for harassment and discrimination and I work for a branch of the Canadian Government! How can we expect the private sector to understand this illness when our own government can not?

We are tired! You may not see what’s going on below the surface but we are fighting every day an invisible war with our own bodies!

Our illness is invisible, but we are not and we have been silent long enough.

Signed 1 in 2000 Canadians that have SLE. (There are three other types of Lupus, but sadly, statistics Canada does not capture these stats)