After having lupus for over 13 years I find myself still constantly having to explain this disease to my family and friends, and to some extent this is of course expected. However I have come to realize that most people including my family have little idea of what LUPUS really is.
Click on this link of an earlier blog post ( Know Lupus) which gives you a detailed description of lupus. The truth is, the complexity of this autoimmune disease doesn’t make it easy to understand. Lupus 101: Every lupus patient experiences lupus differently. There are different types of Lupus and patients can be at different stages of Lupus. So you cannot assume I am doing well, just because I may not look sick. Other people you know living with lupus may be more visibly affected. People often make assumptions about how you are doing based on how you look. This might work sometimes but not all the time. I don’t think there is a single lupus patient, who hasn’t experienced someone saying this statement to them “BUT YOU DON’T LOOK SICK” and yes sometimes we really don’t look sick
A Lupus patient can be in between flare-ups or without visible symptoms. Other times we may be suffering internally where our body is at war with itself. From one week to the next, or from one day to the next, symptoms can change. However learning the basics of what this disease is makes you better equipped to support someone living with Lupus.
According to the Lupus foundation – Lupus affects more people than sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis COMBINED.
Yet much of America is still largely unaware of what Lupus is. This is why I am dedicated to educating, advocating, informing as well as sharing my experiences about how to live well with this disease. I want to help people have a better understanding of lupus patients and this disease.
My Lupus “But you don’t look sick”
With knowledge comes understanding and with understanding comes the desire to help us fight for a cure.
Living with Lupus is a struggle. Even though I have no liver failure (often associated with the disease), that doesn’t mean it is any less difficult living with this disease. My visible symptoms are hair loss and discord rashes (symptoms associated with that) on my face and different parts of my body. This combines with fatigue, chronic pain and cognitive dysfunction makes for an awful cocktail. All these symptoms limits the activities I am able to participate in on a given day.
For example it was difficult keeping up the pace at work. which lead me constantly being afraid of making mistakes or being seen as inefficient. It can be a financial strain on the family when a family member with lupus have to stop working or to cut back on work. All these limitations causes stress and depression.
Cognitive Dysfunction – Brain Fog
After having Lupus for years, this organ attacking disease started to attack my brain. It got difficult to multi-task, problem solve and to focus. Having brain fog makes you have a difficulty time concentrating, following instructions, learning new task or absorbing information. For me of all the difficulties of this disease, this was one was very though for me to accept.
When conversing, my reaction time has gotten slower, and I sometimes cannot find the words to form complete sentences. Even when I find my words I sometimes recognize that what I am saying doesn’t make sense. I often recognize on the face of the person I am talking to that I am not making sense. I also experience people asking me to explain or repeat what I am saying. My ability to communicate effectively and efficiently is now diminishing slowly. I am beginning to feel like I coming across as being less intelligent, incapable or credible – and this is slowly breaking my spirit.
It is not easy to explain to you the frustration of living with Lupus every day. However I am a warrior and will not allow this disease to define me.
I hope this video below helps you to better understand Lupus.
Please take the time to inform yourselves about Lupus and help us solve this cruel mystery. You can donate to the Lupus foundation of America, Volunteer, or just support someone living with this awful disease.
“BUT YOU DON”T LOOK SICK”
DISCLAIMER: The information provided and presented is to meant to educate and inform visitors in their quest to learn more about this horrific disease. The research and information provided on this site are not meant to be used as a substitute for Professional Medical advice. Information is gathered from several sources via the internet, print and interviews with doctors and professionals and may differ from your physician’s advice. Before attempting to change anything in your medical or health regimen, It is recommended that you first check with your personal physician.