Difficulties of Getting a Lupus Diagnosis
Last updated: October 2023
On my lupus journey, it took me a number of years before I received my official diagnosis. It was a very long road, with many twists and turns.
When I look back at that time it was incredibly daunting. I felt like my life was on hold because I was too sick to carry on my life as I knew it back then - going to work, socialising and generally feeling fit and healthy.
Everything had ground to a halt however and getting answers as to why I was so sick was going to prove very difficult. I had many strange symptoms including crushing fatigue, aches, pains, heart issues and horrendous bowel and stomach problems plus I had lost a lot of weight. I needed answers desperately!
Waiting for diagnosis
This would prove futile and sadly there are many lupus warriors out there who have had to wait a long time before they finally received their diagnosis.
Lupus can affect virtually any part of the body and it will often attack vital organs such as the kidneys. If this happens damage can be done so getting a prompt diagnosis makes it all the more important so appropriate treatment can begin.
I was extremely lucky because I remember my rheumatologist telling me that l had no lasting damage to my body considering I had gone undiagnosed for so long.
Lupus can be misdiagnosed for several reasons. One is that symptoms may appear slowly over time which can come and go. This was certainly the case for me. I seemed to have sporadic phases. I was often visiting my doctor but I was always sent away with words such as ‘irritable bowel’ or ‘post viral fatigue’ being mentioned.
I felt like I was going crazy. I was referred to many consultants over time including cardiologists, neurologists, gastroenterologists and even a rheumatologist who ironically told me I did not have lupus!
Mimicking other conditions
In the end, one doctor told me that I most likely had M.E (myalgic encephalomyelitis) and fibromyalgia and I finally felt like I was getting somewhere. Although they put me on antidepressants which didn’t sit right with me as I wasn’t clinically depressed at the time.
There is also a lack of awareness of lupus. I certainly hadn’t heard much about it before my diagnosis, although more is thankfully being done to change this.
It can also mimic other autoimmune conditions. To help eliminate other diseases physicians of the American College of Rheumatology have established a list of 11 criteria. The patient must have at least 4 of them at the onset:1
- Malar rash – red rash across the cheeks
- Discoid rash – red patches of skin associated with scaling and plugging of the hair follicles
- Photosensitivity – rash after exposure to the sun
- Ulcers – sores in the nose and mouth
- Serositis – inflammation of the serosal surfaces
- Renal disorder
- Neurological disorder
- Haematological disorder
- Immunological disorder
- Anti-nuclear antibody (ANA) test
We know our bodies better than anyone and it’s so important to keep pushing for answers when we get sick. It’s not the news we necessarily want to hear to be told we have a chronic autoimmune disease although I found there to be some relief when I received my diagnosis.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?