I Have Lupus Plus
I have lupus plus. Meaning, I have lupus plus way too many other health issues.
When I was diagnosed with lupus, it was the third time I received a diagnosis that felt overwhelming. However, I felt like the first 2 diagnoses (osteoarthritis – at 25 years old, and fibromyalgia) were likely misdiagnoses where doctors saw symptoms of lupus but didn’t quite see the lupus. After all, lupus is often called "the great imitator," and it usually takes years to receive a lupus diagnosis.
But after I was diagnosed with lupus, it seemed like my list of health issues was never going to stop growing.
It’s not just lupus.
My growing list of health issues
Watching my lupus plus list grow over the years has been hard. Each time I review my doctor’s notes I see my conditions listed in the right column, which goes most of the way down the page. This is part of the list:
The last 2 were added quite recently, much to my displeasure. And, for some reason, this list always includes things that are more like symptoms than diagnoses, such as back pain, anxiety, and joint pain. It also has older issues (like my depression from 2014) or possibly incorrect information (like the fibro).
The burden of managing multiple conditions
Sometimes doctors seem overwhelmed by my medical file. They often tell me they were only able to skim it due to time restraints. So I highlight the medical history that’s most relevant to my reason for the visit. At times I have forgotten to include information if a problem hasn’t bothered me in a while. When you have a long and detailed medical history, it can be hard to remember everything.
Developing new symptoms and receiving new diagnoses puts more weight on my shoulders. I struggle to deal with multiple conditions. This is not uncommon, however. Once you have one autoimmune disease you’re more likely to develop another.1 If you have 3 or more it’s called multiple autoimmune syndrome (MAS).
Pointing the finger at lupus
I have lupus plus many other issues, but I am prone to blaming any and all symptoms on lupus, which has caused me issues a few times. It’s easy to attribute things to lupus, especially if they could be related. For example, is it high blood pressure or is it a symptom of kidney issues from lupus? Is it anemia from an iron-deficient diet or is it caused by lupus?
Additionally, I feel like lupus is responsible for making things worse. I spent a year and a half nearly bedridden from pain and fatigue before my diagnosis. In my opinion, that level of inactivity worsened my health significantly and is likely the reason I have many pain issues.
As my lupus plus list grows, so do my questions. Why do I have [new symptom]? How is it interlinked with my other issues? Do we have to add another medication? Will I ever get my body to change directions and improve??
It seems like we’re always exploring more possible diagnoses – things in the “suspected” category. While it’s important to understand what is wrong, I want to shift my focus from exploring health issues to treating them.
Was lupus was the beginning of more health issues for you? What does your list look like?
Have you experienced adverse side effects to your lupus medications?