Crohn's Disease

What to Do If You Suspect You Have an Autoimmune Disease

Do you feel like something's off with your body, but doctors keep telling you that you're fine? It’s super frustrating when you suspect you have an autoimmune disease but can’t quite put your finger on it, especially when your symptoms mimic your friends who have already been diagnosed.

Mark Nicoll

Aug 9, 2024 • 5 min read

Woman sitting in a surgical chair with a male friends for support

Don’t worry, you’re not alone. Many people face this struggle and experience the frustration of having symptoms but no diagnosis. This article will help guide you on how to advocate for yourself, push for a diagnosis, and take control of your health journey.

Let's dive in with a smile! 😃

What Are Autoimmune Diseases?

Autoimmune diseases occur when your immune system mistakenly attacks your own body, thinking it's the enemy. There are over 80 types of autoimmune diseases, such as rheumatoid arthritis, lupus, multiple sclerosis, and more. The tricky part?

They often share symptoms, like fatigue, joint pain, and skin issues, making them difficult to diagnose. Here’s a fun fact: women are more prone to autoimmune diseases than men, and they often show up during young adulthood. The signs may be subtle at first, but if you're experiencing a strange combination of symptoms, it's worth investigating further.

Step 1: Trust Your Gut Feeling (pun intended)

Your intuition is powerful. If you suspect something is wrong, don’t ignore it. Listen to your body and start documenting everything. Keeping a journal of your symptoms can be a game-changer.

Note down:

When symptoms occur: Morning, night, after meals, during stress?
What triggers them: Stress, food, lack of sleep?
Intensity and duration: How severe are the symptoms? How long do they last?

Think of it as your detective work. The more detailed your journal, the better. This will help you spot patterns, and your doctor will appreciate the comprehensive information.

Step 2: Get to Know Your Family History

If you can, chat with your family about any history of autoimmune diseases. Genetics often play a role, so knowing your family’s health background can provide valuable clues. If Aunt Susie has lupus or Grandpa had rheumatoid arthritis, mention this to your doctor.

It might help them see a bigger picture and connect the dots. Family stories can be interesting, so think of it as a chance to learn more about your lineage!

Step 3: The Research Party (Grab Your Detective Hat)

Now it’s time for some online detective work. Research the symptoms you're experiencing and any autoimmune diseases that might match. Remember, though, Dr. Google isn't always right, but it can give you some useful insights.

Reliable sources to check out:

National Institutes of Health (NIH)
Mayo Clinic
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Autoimmune Registry websites

Pro Tip: Don't fall into the rabbit hole of terrifying self-diagnoses. Use this information to prepare questions for your doctor, not to scare yourself into oblivion!!!

Step 4: Make the Appointment – You're the Boss!

Now it's time to take action. Book an appointment with a primary care doctor or a specialist if possible. Here are some tips to make the most of your visit:

Prepare a List of Questions: Write down everything you want to ask, even if it seems trivial.
Bring Your Symptom Journal: Share your documented symptoms with your doctor to help them understand your experience.
Be Assertive, Not Aggressive: Politely express your concerns and insist on getting to the bottom of your symptoms. Remember, you're the boss of your health!
Consider a Second Opinion: If you’re not satisfied with the response, don't hesitate to get a second opinion. Another doctor might have a different perspective or approach.

Step 5: Request Specific Tests

Many autoimmune diseases are diagnosed through blood tests that measure inflammation markers or specific antibodies. Consider asking for tests such as:

Antinuclear Antibody (ANA) Test: Detects autoimmune diseases like lupus.
Rheumatoid Factor (RF) Test: Screens for rheumatoid arthritis.
Erythrocyte Sedimentation Rate (ESR) and C-reactive Protein (CRP): Measures inflammation levels.
Thyroid Function Tests: For autoimmune thyroid conditions.

Tip: Don't hesitate to discuss what tests might be appropriate based on your symptoms and family history.

Step 6: Connect with Others

Join support groups or forums related to autoimmune diseases. Online communities can offer comfort, advice, and even recommendations for doctors who specialize in autoimmune disorders. It's like finding your tribe!

Online Forums & Communities:

Reddit: Subreddits like r/autoimmune can be a supportive space.
Facebook Groups: Search for autoimmune disease support groups to connect with others.
Autoimmune Blogs: Many bloggers share their journeys and insights that might resonate with you.

Step 7: Take Care of Yourself

While seeking a diagnosis, remember to take care of your mental and physical well-being:

Eat Well: Focus on a balanced diet rich in whole foods, fruits, and vegetables.
Sleep Well: Your body heals and repairs cells when you sleep.
Stay Active: Gentle exercises like yoga or walking can be beneficial.
Practice Mindfulness: Techniques like meditation or journaling can help manage stress.
Rest and Relax: Listen to your body and give it the rest it needs.

Step 8: Be Patient and Persistent

Diagnosis can be a long and frustrating process. Stay patient, but don't lose your persistence. It's like a detective story with a twist – sometimes, it takes time to solve the mystery.

Conclusion

Suspecting you have an autoimmune disease without a diagnosis can be a perplexing and exhausting experience. But with the right steps, persistence, and support, you can navigate this journey and find the answers you need. Keep advocating for yourself, trust your intuition, and remember that you're not alone in this process.