Newly diagnosed with autoimmune? 7 Strategies to consider

When I was diagnosed with Sjogren’s I remember calling my husband and saying, “Guess what? I have SJOGRENS!! !” His response was “WOW — what is that and why do you sound happy?!” Of course, I wasn’t happy — I was relieved. Relieved that someone finally listened to me. Relieved that all of the symptoms and feeling icky weren’t all in my head. Relieved to know what it was so I could figure out how to cure myself. Ha. And so the journey began.

A few years ago it took an average of six years from the onset of symptoms to receiving an accurate diagnosis. Today, according to the Sjogren’s Foundation website, it takes an average of three years to receive a diagnosis. I’m not sure if more people are being diagnosed or more people are sharing their stories but according to Dr. Google, more than 23.5 million Americans are autoimmune patients. Symptoms range from mild and barely noticeable, to aggravating, to debilitating, to death.

I’m not a doctor so please don’t follow anything I say as medical advice. I am a Sjogrens and Celiac patient. My lab work teeters on Lupus (sometimes that positive ANA is there and sometimes it isn’t and that has been consistent for years) The things I share on this blog are my own experience. Take what you like and leave the rest. I share a little of my story and offer a few suggestions of things that have worked for me in the hopes that it will help you or someone you know.

Be your own advocate

There isn’t a one size fits all with Sjogrens or any autoimmune disease. There are commonalities but you are unique. Your body is unique and the circumstances that got you to your diagnosis are unique. The way you manage your illness will be unique.

Keep good notes. Keep your lab work results organized.

Educate yourself so you can also educate your loved ones. Having an autoimmune disease impacts every aspect of your life, which, unfortunately means it will impact those who live with you. Oh, I sooooo did not want to hear that when I was newly diagnosed! This is a marathon, not a sprint and you will need and want positive support for the journey.

Take a break when it all becomes overwhelming. Treat yourself with as much love as you would if someone you loved was diagnosed with a chronic condition.

Do your research

Before I was diagnosed I was convinced I had Celiac disease. Being the methodical person I usually am, I did my research, printed off a list of symptoms and checked all the boxes, and had a journal of what I was eating and how I felt. Proud of my own research, I made an appointment with my PCP. I was not a stranger in his office. Eighteen months earlier I was really sick with a bronchial infection, what I now know was the Epstein Barr virus, and never felt fully healed or restored….but, I digress…

I showed him the list of symptoms and the journal, which included symptoms and how whatever I had eaten was impacting my daily life and told him how I still had this debilitating fatigue and constant bloating, and just felt like I had the flu every day. His response? “Celiac and gluten are the latest fad. You have no intestinal issues. Very few people actually have celiac disease.”OUCH. I left that appointment feeling overwhelmed and hopeless. There were tears. I regrouped for a few days, called him back and said, “Please listen — I know something is off. Please run whatever test, outside of the normal lab work, you think will help.” My ANA came back positive. I had no idea what that meant. He told me I most likely had lupus and referred me to a rheumatologist.

Do your own research. Get good at listening to your body. When something feels off, it is. Trust your gut and keep going until you get the answers that make sense to you. You may not like the answers but at least you know what you’re dealing with.

Find your healthcare team

Learn how to work with your doctors — they are your greatest partners to optimal health. If one isn’t working with you or for you then find another one. Easier said than done, believe me, I know.

For me, it took a couple of years and I talked to people who were dealing or dealt with health issues. In Little Rock, we have a gluten free bakery. I went in and introduced myself to the owner and started asking her questions. She was (and is ) a wealth of knowledge and recommended two or three doctors and healthcare practitioners in our area. I will forever be grateful to her!

Today, my healthcare team consists of: Functional Medicine doc, PCP (Internal Med) Rheumatologist, Dentist, Ophthalmologist, a Dermatologist, and my therapist!

You need the right team. Determine the specialists you need and start making appointments. Not everyone needs the same specialists. Establishing a relationship with your doc and a baseline are invaluable as you navigate these waters. There will be ups and downs. Remember, this journey is a marathon not a sprint.

Find positive people who will support you

Reach out to someone you know who is also an autoimmune patient. There are people who will listen to your story and share their own with you. Social media platforms have some great groups with really knowledgeable and supportive people. Type whatever diagnosis you have into the search bar on the social media page or use a hashtag. There is a wealth of information — some is valuable, some isn’t. I have connected with autoimmune patients through FB, Instagram, YouTube, and podcasts. I have made one very good friend from a social media group and she has helped me tremendously. We share information and strategies often. You WILL find TONS of “woe is me” groups. Somedays, “woe is me” is what you need. Most days it isn’t. No judgment here. Find your people.

Diet Matters

Another thing most people, myself included, don’t want to hear is that diet impacts your disease. I liked and enjoyed what I was eating and cooking and did not want to change it. At the time, my job required me to be around other people regularly and I was sharing coffee, lunch, dinner, etc, with others at least 4-5 times every week. I’m active in my community and many community gatherings center around or include food. It’s not like I was going to brown-bag it. Changing my diet meant changing my life and I was not a happy camper and went kicking and screaming.

There are so many great resources and doctors who share their autoimmune protocols and stories. Dr. Amy Myers, Dr. Terry Wahls (an MS patient), Dr. Brooke Goldener (a lupus patient), Dr. Esselstein, Dr. Dean Ornish — these are a few of the many that I’ve read and studied. The common denominator is to reduce inflammation. I’ve tried so many diets just to find relief, not even healing–paleo, autoimmune protocol, Whole 30, whole food plant based (WFPB) low carb…the list could go on and on. ALL of them help! For me, there hasn’t been one size fits all. Find what works for you.

My result? Today, my diet is completely different than it was when I was newly diagnosed.

Easy? No. Happy about it? NO.

A linear process? Hahah — um. NOOOO.

Can I have a slice of pizza and a beer or a piece of wedding cake? Not in this lifetime.

Eating a gluten free, low-inflammatory diet is one of the best tools in my toolbox today.

Be open to alternative options

Functional medicine – my functional medicine doc has been a lifesaver! Seriously.
Acupuncture – I don’t understand it but it helps.
Yoga, especially yin yoga and gentle, restorative yoga – I DO understand why practicing yoga helps but that is a different blog post. I am a yoga teacher and have practiced for more than 20 years. Since my diagnosis, my practice has completely shifted and today, it helps me with everything from keeping my parasympathetic nervous system healthy to managing pain, to reducing inflammation.
Meditation — Insight Timer is an awesome resource and it’s free. Turn it on for 5 minutes and breathe.
Massage and Reiki – again, I don’t understand too much but it helps keep me balanced and has helped me with pain.

Take care of your mental health

There is so much information online and a lot of it is negative. You’ll read and hear things that no one wants to hear or deal with. No one wants a chronic condition for which there is no cure and no one knows too much about it. (Sounds fun, right?!) And yet, you have been diagnosed, and so I have I. We play the hand we’re dealt. Rest when the whole thing gets overwhelming and talk to someone when you feel you need to. You are not alone.

Resources

A few resources that deal with the science behind these diseases. I’ve only listed a few of the common ones – you can always google (name of condition) Foundation and whatever you’re looking for will pop it. Good places to begin…

Celiac Foundation – https://celiac.org/

Lupus Foundation – https://www.lupus.org/

Scleroderma Foundation – https://www.scleroderma.org/site/SPageServer/#.YNizuetOlPM

Sjogrens Foundation – https://www.sjogrens.org/