Lori's Story

I’m not sure what I can say that can help…except that my life has changed drastically since I have been diagnosed with Lupus, and one of the biggest obstacles has been employment. I’ll start from the beginning…because I have only had a diagnosis 7 years ago (Sept, 2001), although symptoms were present and building up for at least 10 to 15 years earlier. Diagnosis is another big problem with Lupus sufferers that I have found with talking to other people with Lupus.

I realize that a lot of Lupus sufferers are diagnosed earlier in their life…like teenagers or young adults. That was not my case. By the time I was diagnosed…I was 41 years old…yet, there were symptoms for years and was told by various doctors that I had “Lupus-like symptoms”. But I was never referred to a specialist…which could have put me on medications that could have prevented the inevitable destruction of my life.

I say that, because, even though there were some symptoms…I was in very good shape, both athletically and in general health. Yes, I was 41 when I was diagnosed, but I was in top shape for my age…actually…I was pretty buff and strong, and proud of it! I was a single mother, and I worked at a stressful job, and I didn’t own a car, so I walked half a mile to get groceries, and did “everything” myself. So, I built up a pretty healthy body through hard work, and was the envy of friends and co-workers, and known to be a real go-getter! And I had energy that could drive people nuts! I was…go-go-go! This is the person I am used to being…the one that people joke about bouncing off walls with so much energy!

This is why when one moment…in the middle of the night…I woke up to such excruciating pain that I could not move…and my life changed! It was sudden, and scary, and although my oldest sister had been telling me for years that I had Lupus (and I told her she was crazy…I’m totally healthy…but she saw it in me) it still took me by surprise! And then there was the humiliating episode at the hospital that night where the doctor on charge in the ER thought I was faking it and treated me like some street person wanting drugs! Yeeesh! It was humiliating! I showed up to the hospital terrified about what was going on with me…and they treated me like dirt! And then…I have to phone work and say something like I can’t “move”. Lori…the go-getter can’t move?

Since that day…my life has changed so drastically. I feel like I don’t know myself…or to put it better…the Lori I once knew has just disappeared! I don’t have that energy. I have pain every day. I’m sick all the time…whether it results from the Lupus or the side-effects of the medication…I don’t remember ever having a normal day for the longest time!

A few months before this happened…I lost my mother…and I grieved her loss. I have been grieving her loss since, along with the loss of “ME!” The loss of me does not only affect myself…it affects my children (which I could not take care of them the way I used to). It affects my social life when I don’t have the energy to go anywhere. I can’t go outside in the summer because of the sun’s effects on my Lupus. Anytime the weather changes…my hands feel crippled!

I am lucky that I have a spouse that is very understanding. He knew me before I had Lupus, and admired me for my energy back then, but is now doing the dishes and vacuuming that I can’t do any more because of the arthritis. He is a charm!

But…the worst part of having Lupus is the outside world. Employment is the hardest part of being disabled with Lupus. Of course, companies are open to people who are wheelchair bound, or deaf, or some kind of minority that you can obviously see. But, try to explain to an employer, or a potential employer about your Lupus condition, and that you get sick once in a while, and guess what…NO JOB!!! Even though Lupus is under the umbrella of disabilities as a chronic condition…As noted on the Government of Canada website…


Employment Equity
Designated Groups
Persons with Disabilities

As defined in the Employment Equity Act, "persons with disabilities" means persons who have a long-term or recurring physical, mental, sensory, psychiatric or learning implement and who;a) Consider themselves to be disadvantaged in employment by reason of that impairment, or;
b) Believe that an employer or potential employer is likely to consider them to be disadvantaged in employment by reason of that impairment; and includes persons whose functional limitations owing to their impairment have been accommodated in their current job or workplace.


I, myself, work for the Federal government. I will not state in what department. I had been working with them for 2 years when I had had my big Lupus flare episode (as mentioned earlier) and was finally diagnosed. But since I have been diagnosed, I have found myself having to fight for my job because of my Lupus. I have worked for them as a seasonal employee for the last 10 years. They have always been happy with my work and my professionalism, and they generally like me as a person…but, because I need to take some sick days off because of my Lupus…they have to have “The Talk” with me at the end of the term each year. Even though I try to explain my situation with them…it is their policy that anyone who takes sick days goes to the bottom of the re-hire list. So…even though I do better work than other employees…I am treated like scum because I am sick some days. That is the companies…”The Government of Canada’s” policy! Yeah...Canada ! My supervisors who know me personally…have always been very understanding and kind, and have actually apologized to have to give “The Talk” because they know I am a good employee…but policy makes them do it…and at the end of every term…we all end up crying…because they hate to treat me that way. And they know I am a good employee, and they know that I can’t help that I am sick. God bless the real people! But…I never know if they will phone me back to work…so far they have…they know I am a good employee…but I hold my breath! I am holding my breath right now for a call-back!

The sad fact is…that I work for the Federal Government…and they can’t even respect this as a disability! So the Canadian Government discriminates against employees with chronic illnesses with their own employees…how can they even empathize with the common citizens with chronic illnesses! And they should be the role model for the rest of the country for equal treatment of its employees. Shouldn’t they? Many of my co-workers are in agreement on this and are always sickeningly shocked about how I’ve been treated these past few years since I’ve had Lupus. Those co-workers have been my strong-hold! I couldn't have made it through work without those people who understand that I am in pain, and am trying to make it through my day! God Bless them!

But a big strike against the Government who is supposed to be the role model of Equal Opportunity!

Not only that…even though I have had this running seasonal job with the Government…I have been trying to find a full-time job. I have tried and tried…but when you have a history of sick days…or are asked during your interview about absences and have to send references…well, you never get a call back. Even when you explain your condition…NO JOB!!! How is this equal opportunity!!! It sucks big time!!!

I cannot find a full-time job anywhere because of my condition! I am completely frustrated trying to find work with Lupus. Nobody wants someone like me.

Equal Opportunity...It does not exist for someone like me! I am slowly becoming more disabled because of the Lupus and can understand the need for disability. But, I am sick of the inability to be treated like a human. If nobody will give me a job…even our own Government…how am I supposed to live? And to top it off...there is no options for people in our situation to get disability. We are in the fringes.

I can only speak for myself. I can work...but I can't tell you what day I can work. I can wake up one day and can't move...or one day I can. Today, I can put curlers in my hair...tomorrow...I can't even lift my hand to even brush my hair or my teeth. Or...sometimes...I get up to go to work, and I feel okay, and 2 hours into work...all my joints feel like a truck ran over me. How do you explain that to your boss? One hour is not the same as the next! How does one keep a job feeling this way? Only a Lupus sufferer knows this! This has caused great suffering for me and quite many days of depressions because of waking up and not being able to work. It is humiliating...because many people do not understand or even know about Lupus...so start rumours around work that I am faking some strange disease. There are whispers at work and signals that I am lower...and it spreads. And all I did was take a few sick days...but they turn it into something that I don't even know what...but, I know that they don't understand about Lupus and they think I am faking something. Which I cannot defend...except. if I could change my life to be what I was...I would in a flash. But, here I am...a Lupus patient! Helpless in the continuing failure of my bodily functions.!

How there is no financial safegaurd for this is unfathimable! This is not an illness that can be controlled! It is very unmanagable...and I have tried very hard to manage it...much to my frustration in doing so! It only gets worse year by year! And, as a person who has been very healthey and energetic and a go-getter that has had the misfortune of getting this condition....I completely agree that there should be some disability insurance given to those who suffer from this condition as well as others with similar conditions. Lupus, as well as other Auto-Immune conditions are an under educated, but growing, conditions that need to have more media attention!

There should defintely be some disability insurance for chronic sufferes of these conditions that are having a hard time living day to day and can't find employment due to their condition. Just because they aren't in a wheelchair does not make them no less disabled. It is a real illness...trust me. As a person who truly aches to be a whole person, but can't...We Need Help! I truly wish we didn't...But...We really do!

LORI NOAD