My Story: Getting an Autoimmune Diseases Diagnosis

For most people it can take years, sometimes even decades to get a diagnosis of an autoimmune disease.

For me, it took a long time to even realize I was sick. Crazy right?

In fact, the only reason why I started looking for answers was because my husband, then boyfriend, looked me straight in the eyes after 6 months of dating and said

"you're sick, you need too see a doctor."

I was shocked.

I didn't understand what he was talking about...

He kindly reminded me that I shouldn't be getting sick every time I ate.

He told me that headaches every day aren't normal.

He told me that I shouldn't be in pain that causes me to keel over every single day.

Once I took a moment to really assess my body, I understood what he was talking about.

You see the thing with chronic illness such as the ones I am dealing with, is that often times they come on slow and steady, and if you aren't paying attention they can become 'normal' for you.

In those first couple years of dating I did start searching for answers, and I found a few things that helped.

After dealing with some pretty unpleasant GI issues (I'll save you the details) I was diagnosed with IBS-C.

Which at the time I thought was a pretty BS excuse. It seemed like IBS was a term doctors used as a

"I've ruled out everything, this is what you are left with"

diagnosis and I wasn't happy with it.

With an IBS diagnosis there wasn't really a lot of information out there that would help me out specifically.

Most resources suggested an elimination diet and introducing items back in, and at age 23 at the height of my party days, the last thing I wanted to do was manage a meal plan.

So I kept with my regular diet and pursued other things.

One of which was talking with a Naturopathic doctor, whom provided me with an allergy and sensitivity test.

This test was not the same allergy test that my family doctor provided me (the scratch test for IgE reactions.) This test was an a small sample of blood draw to test IgG and IgA food reactions. You can read more about it here.

This test helped me to understand the food sensitivities that I have which is mostly dairy and gluten.

This was life changing for me.

With these answers I was able to put an action plan in place for my meals instead of playing the hit and miss previously suggested by my family doctor. I started feeling better within a few weeks.

But feeling better didn't last forever.

It was another year or two until I went back to my family doctor as I was having joint pain, muscle cramping, debilitating rashes on my legs and weird sores in my mouth.

My doctor took one look at me and referred me to a rhuemetologist.

In Canada, you often have to wait for specialist appointments. I was told the wait would be 9-12 months.

I was fairly happy when my rhuemetologist got me in within 6 months.

She did a full body assessment and asked me some fairly simple questions.

I do remember this part of the assessment:

Dr. "Do you have dry eyes?"

Me: "Sometimes, I guess I haven't really noticed"

Dr. "Do you use eye drops"

Me: "Yes, mostly in the winter"

Dr. "Do you have a dry mouth?"

Me: "Umm, I don't know, these are weird questions..."

Dr. "Can you eat a cracker without a glass of water"

Me: "No, can people actually do that?"

Dr. "Your bloodwork and symptoms indicate you have Sjogren's Syndrome. I want to do a lip biopsy to confirm. We will also need to get you into a dermatologist, I believe your rash is vasculitis, but we need the biospy to confirm that too."

Me: (looking shocked) " ... I have... What??"

My doctor then repeated her previous statement, gave me some handouts, and prescription.

I was left of my own to figure things out after that...

Part of the reason why I started this blog was to share my story, but to also help those individuals out who are newly diagnosed, or struggling with their chronic Illness.

I was diagnosed (2013) with Sjogren's with accompanying Vasculitis.

I never did get the biopsy for my leg rashes (assumed vasculitis), as that has been in remission now for 3 years.

With my current flare-up (2019), and with changes in symptoms I am now being monitored for Lupus.

The introduction of a possible Lupus diagnosis has me experiencing this "I am newly diagnosed, what the heck do I do know?" state of mind.

What was your diagnosis story?

How many years did it take you to get a diagnosis?

Do you have a supportive medical team, or do you have to fight for answers?

Please share your story in the comments below.

Wishing everyone Health and Happiness,

Heather

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If you are newly diagnosed with Sjogren's be sure to check out my webpage here.

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