Advocating for Myself
I was never married to the idea of a lupus diagnosis, but it seemed like the most likely thing, especially after I finally received the diagnosis of UCTD and knew there was something wrong that the doctors could actually see. But the lupus diagnosis didn’t come until I started seeing a rheumatologist that clearly cared about her patients.
She was passionate about helping them live well with their illnesses and even answered patient emails during her off hours. She was a gem and actually was the first person to treat my illness properly. Without her, I may still be struggling for answers to my constant pain and fatigue.
It's Okay to Grieve
This is a long-winded way to say that my lupus diagnosis was actually a pretty happy occasion. I was relieved that a medical professional finally believed me, that I could actually put something that wasn’t contested by others down on my chart.
It was like finally solving a mystery, finally putting all of my questions to bed. And it also strengthened by trust in my own body as I basically diagnosed myself with it before I was able to get the doctors to agree!
But I recognize for some people being diagnosed with lupus isn’t a relief, but more of a prison sentence. I have met other patients who were diagnosed fairly quickly after showing their first symptoms and went into fits of rage and depression before accepting their diagnosis.
It isn’t easy to hear that you have a disease you’ll never recover from, especially if you are a young person. In fact, it can be downright depressing or seem like the end of your life.
Although living day-to-day with lupus is a struggle for many, some are able to curb their symptoms well enough that they live a life free of many of the complications of lupus. Many people with the disease continue to live rich and full lives and are able to fulfill their dreams.
If you are diagnosed with lupus and are not relieved like I was, give yourself time to grieve. It is okay to feel upset or defeated by the diagnosis, especially if these crazy new symptoms are both uncomfortable and unfamiliar.
Even though I was relieved to be diagnosed with lupus, it doesn’t mean I don’t have days that absolutely suck and that sometimes I don’t just feel sorry for myself all day. Know that, that is okay.
When you are diagnosed, especially if you haven’t read up much on the illness, take this opportunity to educate yourself. While your doctors have their own wealth of knowledge from years of experience, they don’t live in your body and you will ultimately be your own best advocate when it comes to living with lupus. You know your body best and don’t be afraid to be “pushy” or “demanding” if you don’t feel your treatment is up to par or being taken seriously.
Lastly, I strongly suggest joining a lupus support group. For some people, this isn’t possible due to geographical constraints, but with the magic of the Internet, even those in far off corners of the world can connect with their peers. This will help you talk out what it is you’re feeling and it helps knowing you have a friend who can understand you.