Patient stories

When I first got sick, it just pretty much halted me

Benita has Dermatomyositis

I was having a lot of pain and a lot of fatigue, so it made it very difficult to work. It made it difficult to do even just basic household chores and self-care – even brushing my hair, washing my hair could be difficult. Just putting dishes in the cabinet became hard. I could barely lift one plate at a time. 

My hope for the future and living with this disease is that I’ll get at least more stability and I’ll be able to travel again. I want to be able to spend time with my friends and family more without having to worry that I might catch something from them, so my hope is that there would be better medications to get me to that point and there would be greater awareness that people will not have to go so long to get the help they need. 

It’s a hard journey but you get there finally with the right support and people in your corner

Annemarie lives with systemic lupus erythematosus 

It takes me more time to get ready, get dressed, and go out of the door than a healthy person. I have to rest after every small task, such as taking a shower, having my meals, or taking a short walk. It has taken a lot of my energy, but when I finally was able to overcome the challenges and work as a volunteer, I started to live again as it gave me the positive energy that I needed to be normal.

A lot of lupus patients don’t look sick. We don’t want to look sick, but we are sick. If there is more awareness about the disease and how it is to live with it, lupus patients will be more accepted and understood. My hope for the future is that one day there will be a treatment that will help lupus patients have a better quality of life and the possibility to live normal lives.