10 Things I Wish I Knew On My Road to Diagnosis with Sjogren’s and Lupus

Updated: Apr 30



This is the third article of the Learning about Rheumatic Autoimmune Diseases series.


This post shares a little bit about my story with my road to diagnosis and the things I wish I knew when I was looking for a diagnosis.


This is a great post to help you understand more about the medical system and the diseases Sjogren's and Lupus.


If this is your first time visiting the blog, Welcome! We are so glad you found us!


We have a welcome post that explains who we are and how we plan to help you, be sure to check out the post here.


If you haven't done so already, we recommend reading the primary articles in the Learning about Rheumatic Autoimmune Diseases series.


You can find a link to those article here:

Common Questions About these Diseases

Deeper Dive for Sjogren's and Lupus Patients


If you are a returning reader, thanks for sticking with us. We appreciate you and want to continue helping you on your journey.


Let's dive in...


My Road to Diagnosis:


My road, like many of you, was a long and lonely one.


I was ill for 8 years before I finally saw a rheumatologist who diagnosed me with Sjogren’s (and years later with Lupus).


It can be very frustrating if you have been feeling unwell for some time, without answers and without a diagnosis.


Chances are if you are reading this, a medical professional in your life suspects you may have an autoimmune disease.


You might even have a referral in to see a rheumatologist.


But the wait times can be long, and living without answers can be stressful.


I am a true believer in knowledge is power!


Knowledge it’s the driving force behind starting this website and blog.


We (Heather and Marc) want to help educate and inspire those living with chronic illness to live their best lives.


Today I (Heather) have put together a list of all the things I wish I knew when I was first diagnosed with Sjogren’s and Lupus.


If you are waiting on a referral, or if a doctor hinted that they suspect Sjogren’s or Lupus, this information will assist you.


This post will give you the head start you need to be informed and help you to advocate for yourself in the future.


Here is the list of 10 thing I wish I knew when I was on the hunt for a diagnosis of Sjögren’s and/or Lupus:


1. Sjogren’s and Lupus are systemic autoimmune diseases.


This means that the immune system can attack various parts of the body, making it more difficult for a doctor to identify what the diagnosis me or may not be.


2. Not every person has systemic involvement at the beginning.


If the disease is caught early enough, you and your health care team can put a treatment plan in place. Remission is possible and stalling disease progression can happen.


3. Not every person will be able to get their disease into remission.


I’m saying this to be realistic.


For myself, I was able to get my Sjogren’s into remission shortly after diagnosis.


But in 2017 when I experienced 2 back to back traumas, I wasn’t able to get it into remission.


Sadly, many people with Sjögren’s, Lupus, and other systemic diseases often get a diagnosis so late that the disease has progressed past a point of no return.


At that point the best hope to manage the disease with treatment, slow down progression and dampen symptoms.





4. It can take years to get diagnosed properly.


Why?


Because the disease can impact so many body systems, it can imitate several other conditions.


This can fool doctors into making it difficult to get to the root cause and proper diagnosis.


Another reason is because of the systemic nature of the disease, health care workers might not put all the pieces together.


If medical professionals don’t perform a full assessment, a dudpected diagnosis can be missed.


Here is an example:

You go to your dentist for a routine check up. He notices you have dry mouth symptoms. You discuss how long you've had the symptoms, and he gives you a few sample products aimed at helping dry mouth.


In this scenario the dentist didn't complete a full body analysis asking other questions for systemic involvement.


He could have asked questions about the eyes, nose, throat, joints, and skin. If the patient reports that they have dryness symptoms elsewhere the dentist could suspect Sjogren's and support the patient's conversation with their primary care physician to do more assessments and bloodwork.


Sadly, this type of scenario happens all too often.


5. It can take years to get a diagnosis


In Canada it takes an average of 5-9 years to get a diagnosis for Sjogren’s.


In the US it takes an average of 3 years to get a diagnosis of Sjogren’s. This was recently achieved through a campaign educating all health professionals on the systemic nature of the disease. Previous to this it took 6 years to get a diagnosis (in 2012).


In Canada it takes an average of 6-7 years to get a diagnosis for Lupus.



6. If you have a family member with a systemic autoimmune disease, it puts you at higher risk of having one.


It’s best to work with your Primary Care Physician (PCP) to monitor your symptoms and bloodwork.


7. Speak Up! If you suspect you have a rheumatic autoimmune disease.


A great first step is asking your PCP to order an ANA blood panel and put in a referral to a rheumatologist.


8. Getting into see a specialist can take several months.


Depending where you live and what your health care system is like, wait times can be long.

Use this Free Worksheet to help you prepare for your upcoming rheumatologist appointment.


9. If you are waiting to see a specialist.


In the interim ask your Primary Care Physician (PCP) for a treatment plan for your symptoms, even if a diagnosis is still in the works.


10. Online Support Groups can be a tremendous help.


If you are new to your diagnosis, or in search of a diagnosis, I recommend jumping into an online support group. They can be a tremendous help with tons of resources, information and support along your journey.


Here is the support group we run for Sjogren’s and Lupus patients.


Conclusion:


The road to diagnosis of an autoimmune disease is a long, often lonely road.


This list was put together to help educate you on the road to diagnosis.


It is our hope that this information will assist you in getting to a diagnosis faster by learning more about why it takes to long.


Resources like our online support group for Sjogren's and Lupus Patients is a tool that provides peer-to-peer support, so you do not feel so alone. Please stop by and say hi, we would love to meet you and hear about your story.


Wishing you Health and Happiness,


Heather and Marc


Be sure to sign up for our Newsletter if you would like to be informed of new posts, more resources and information, our children's book, and other stories from rheumatic illness patients and wellness warriors.





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