I Have Lupus Plus
Last updated: March 2023
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 lupus. After all, lupus is often called "the great imitator." 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:
- Systemic lupus erythematosus
- Chronic dry eye
- Polycystic ovary syndrome (PCOS)
- Gastroesophageal reflux disease (GERD)
- Chronic hypertension
- Myofascial pain syndrome
- Temporomandibular joint dysfunction (TMJ)
- Overactive bladder
- Restless legs syndrome (RLS)
- Thygeson's disease
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 could only skim it due to time restraints. So I highlight the medical history most relevant to my reason for the visit. Sometimes I forget 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 syndromes (MAS).
Pointing the finger at lupus
I have lupus plus many other issues, but I am prone to blaming any 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 a symptom of kidney issues from lupus? Is it anemia from an iron-deficient diet, or does lupus cause it?
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. 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??
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 the beginning of more health issues for you? What does your list look like?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?