What You Should Do After an Autoimmune Disease Diagnosis

autoimmune-disease-diagnosis

what to do when you get an autoimmune disease, autoimmune disease support groups, autoimmune disease help, autoimmune disease books, how to heal autoimmune disease

So, you’ve joined the club.

You know, the one absolutely nobody ever wants to join.

You’re not alone: 1 in 5 Americans will receive an autoimmune diagnosis in their lifetime.

Many of those are women.

Welcome.

Receiving an Autoimmune Disease Diagnosis:

Receiving your first autoimmune diagnosis is a uniquely complex experience, because statistically speaking you probably:

  • Have been in some degree of pain for a long time
  • Have endured many tests and doctor’s appointments
  • Dealt with negative reactions from family and friends
  • Tried to treat yourself homeopathically
  • Googled your symptoms and thought you must be dying
  • Felt the horrible anxiousness of awaiting blood test results

And now, you’ve finally got answers- and yet that soul-crushing moment is riddled with both relief and grief, as the reality sets in that you’ll probably have this forever.

As a person who has received 2 autoimmune diagnosis and sat by my lifelong best friend while she endured even more of the above to finally be diagnosed with fibromyalgia (we suspect more labels are coming soon), I’ve learned a few things about how to cope and what you should do first after it happens to you.

My genuine hope is that the following encourages you, gives you a few actionable items, and offers support and empathy so that you know that even when it feels like you are alone – you are not.

autoimmune-disease-diagnosis

So, You’ve Been Diagnosed With an Autoimmune Disease:

The emotions will come in waves.

In one breath, you will be relieved to finally feel like you are not crazy, that these pains were actually related to something specific, something with a name, something you can tell other people.

There is – validation to that.

That validation brings relief.

If you have an AD that offers treatment options, you could even feel a little hopeful that maybe, just maybe, you will find some relief from the chronic symptoms soon.

Then, the grief will come.

Very quickly, if not simultaneously, finally getting a label will almost immediately trigger a rush of grief.

Grief is a funny thing. It can’t be controlled and it won’t be told what to do.

If you push it aside, it takes longer to move past it.

My best advice is to allow yourself to feel the grief. Sit in it. Don’t force it to go away. Allow yourself to fully grieve the news that you have just received and what it means for you and your future.

There is this analogy that grief is like a tunnel. You enter the tunnel and there is no way to know how long the tunnel is or how long it will take to get through.

The only way through the grief is through the tunnel.

Allow yourself all the time you need to process and to move through the grief tunnel.

Once you are out, you will know. You will just wake up one day feeling like you have moved past it into acceptance. Sure, it will still suck, but you will be ready for the next phase.

1. Where To Find Support:

Even though 1 in 5 will be diagnosed, it is still likely that you will not know anyone personally who has been open about their own health journey.

There is still stigma on autoimmune diseases, and a lot of negativity about them (mostly because they are misunderstood) and so you will probably feel alone.

But, you’re not.

There are a lot of us out there.

Your first order of business after being diagnosed is to find your people. Your new people, who are also in this awful club with you.

Here’s where you’re going to find them:

A. Reddit Forums:

I wish I had found these sooner. Reddit is amazing for this kind of thing. I’m going to briefly walk you through how to find your people in Reddit forums.

  1. Start by going to Reddit. Set up an account.
  2. Search for forums with keywords, such as: lupus, sjogrens, crohns, etc.
  3. Then, just join as many as you like by clicking, “Join.”
  4. Once you have been accepted, you can read other’s posts, comment, and post your own.

Here is a picture of what it looks like when you’ve searched for forums and are ready to join:

autoimmune-disease-diagnosis

Reddit Karma Points:

Reddit works hard to prevent spammers by using something called “Karma Points”. You track your Karma Points by looking at the number in the top righthand corner of the screen. It looks like this:

autoimmune-disease-diagnosis

For every comment or post, you receive a Karma Point and then you spend those points when you comment and post.

At first, you will only be able to comment or post a couple of times before Reddit will pause you. This gives Reddit time to sort through who is using the forums responsibly vs. bots that are spamming the forums.

Over time, you’ll have enough points to comment, post, with ease.

These people will become your tribe – your safe place – where you can share symptoms, frustrations, bad days, good days, lab tests, wins, losses, ideas, supplements that work, solutions that don’t, and more.

B.  Facebook Groups

Facebook has similar groups to Reddit. Although, I will say that the FB groups can feel a lot less welcoming and understanding.

Either way, they are an incredible resource when you find the right one.

To find them, simply search, “Autoimmune Disease Support Group”.

For example, when I searched that, here’s the first few that came up:

what to do when you get an autoimmune disease, autoimmune disease support groups, autoimmune disease help, autoimmune disease books, how to heal autoimmune disease

But, there are a lot more than that.

You can also search by location – “California Autoimmune Disease Support Group” and also by specific disease, “Lupus Support Group”.

To join, you need a FB account of your own. If you don’t have one, you can set one up quickly just to be able to access the groups.

Don’t be afraid to leave groups that aren’t serving your needs or making you feel better.

C. Local Groups

You can also find others who are in your area by searching sites like Nextdoor. You can post asking for suggestions or to meet up with others who know what you’re going through.

Or, you can look for local groups on Craigslist, Facebook again, or other local sites.

D. Dr. Recommended

Your rheumatologist may also be knowledgeable about groups in your area that provide support, either online, in-person, or both.

2. Do Your Research:

Listen, I respect doctors big-time and Western medicine is a medical marvel.  #SALUD

However, one person cannot know everything.

Do your own research.

Start reading books, even if you just rent them from the library, and start looking up things online, from forums, websites, other experts in the field, etc.

Don’t be afraid to think outside the box and try new things.

Over the course of my journey, I have kept a very open mind about trying new things that could help. Some did, some didn’t.

But, I always say that when it comes to trying new things – I never argue with results.

Who cares if it could be a placebo effect?!

Did it make you feel better? KEEP DOING IT.

Who cares if someone in your family thinks it’s a racket?!

Did it make you feel better? KEEP DOING IT.

If it helps, here’s a list of things I have tried over the years:

  • Acupuncture
  • Chinese tinctures
  • Reiki
  • Massage Therapy
  • Homemade products
  • Dozens of supplements (I share my top 10 favorites in this post)
  • Dozens of lotions
  • Meditation
  • Yoga/Pilates (I share how to start this in this post)
  • Chiropractic
  • Prayer
  • Various products (I share my favorites in this post)
  • Physical Therapy
  • Smoothie Diets (I share my favorite smoothies in this post)
  • Autoimmune Protocol diets
  • Food Detox Diets
  • & More

So, take it from me – you are allowed to try new things. You are allowed to embrace any positive result without caring if it’s placebo or not. You are allowed to flip the middle finger to anyone who makes you feel bad about trying these things.

You. Do. You.

autoimmune-disease-diagnosis

3. Recommended Reading:

I touched on reading books earlier and now I’ll share my personal favorites with you. Each of these 8 books provide meaningful information that moved me forward in my understanding of autoimmune diseases, how they effect the body, and what I can do to heal and find relief in some capacity.

No one book is a 100% catchall. You’ll pick and choose what works for you personally as you continue on in your journey.

Try something new. Scrap what doesn’t work. Stay open-minded.

You can click any picture to be taken to the Amazon page. If you choose to purchase any of these, I’ll receive a small commission at no cost to you. This just helps offset the cost of running this blog. Or, you can always find the books in your local library for free.

 

This is my #1 recommendation. This book changed my life. I now use several of her supplements and have made several changes to our home and the products we use because of Dr. Amy Myers.

Be advised, it will feel overwhelming at first. Just do one thing at a time. One small change at a time adds up to big changes over time.

Sign up for her emails to get easy, actionable advice you can take to improve your wellness sent straight to your inbox. And, her blog is a rich resource of free, powerfully effective tips and tricks for finding relief.

She also has a cookbook, which I am ordering soon. You can find it here. 

 

“The Paleo Approach is the first book ever to explain how to adapt the Paleo diet and lifestyle to bring about a full recovery. Read it to learn why foods marketed as “healthy”—such as whole grains, soy, and low-fat dairy—can contribute to the development of autoimmune conditions. Discover what you can eat to calm your immune system, reduce inflammation, and help your body heal itself. Find out which simple lifestyle changes—along with changes in diet—will make the biggest difference for your health.” (See more here.)

 

“Armed with more than 175 budget-friendly, quick and easy recipes made with everyday ingredients, you get to minimize time and effort preparing healthful foods without sacrificing flavor! Straightforward explanations and a comprehensive collection of visual guides will teach you which foods are the best choices to mitigate chronic illnesses, including autoimmune disease. Real-life practical tips on everything from cleaning out your pantry and easy ingredient swaps to reinventing leftovers and DIY flavor combinations will help you go from theory to practice effortlessly. Even better, twelve 1-week meal plans with shopping lists takes all the guesswork out of your weekly trip to the grocery store!” Read more here.  

 

While not focused specifically on autoimmune diseases, Max’s research and suggestions will also benefit those of us with an AD.

“In Genius Foods, Lugavere presents a comprehensive guide to brain optimization. He uncovers the stunning link between our dietary and lifestyle choices and our brain functions, revealing how the foods you eat directly affect your ability to focus, learn, remember, create, analyze new ideas, and maintain a balanced mood.” Read more here.

His Instagram is also full of really helpful, easy to apply information for improving health.

 

What I’m currently reading – with a forward by highly respected expert Dr. Mark Hyman.

Here’s their blurb about this book: 

“The good news is that many autoimmune conditions can be reversed through a targeted protocol designed to heal the autoimmune system, 70 percent of which is located in the gut. The Autoimmune Fix includes two comprehensive 3-week plans: In the first 3 weeks, you’ll follow a Paleo-inspired diet during which you cut out gluten, sweets, and dairy—the three primary culprits behind autoimmunity. Once the dietary changes have been addressed, The Autoimmune Fixfocuses on the other causes of autoimmunity such as genetics, other dietary issues, and microbiome. The Autoimmune Fix provides a practical and much-needed guide to navigating these increasingly common conditions to help you feel better and develop a plan that works for you.” Read more here. 

 

An incredible book, written by a doctor who was diagnosed with MS. It progressed until she was in a wheelchair and then she used the protocol until she “walked slowly, then steadily, and then she biked eighteen miles in a single day. In November 2011, Dr. Wahls shared her remarkable recovery in a TEDx talk that immediately went viral. Now, in The Wahls Protocol, she shares the details of the protocol that allowed her to reverse many of her symptoms, get back to her life, and embark on a new mission: to share the Wahls Protocol with others suffering from the ravages of multiple sclerosis and other autoimmune conditions.” (Read more here.) 

 

Dr. Mark Hyman is a real leader in the  wellness space. While he doesn’t speak solely on autoimmune diseases, his research and solutions do cross over.

“In THE BLOOD SUGAR SOLUTION, Dr. Mark Hyman reveals that the secret solution to losing weight and preventing not just diabetes but also heart disease, stroke, dementia, and cancer is balanced insulin levels. Dr. Hyman describes the seven keys to achieving wellness-nutrition, hormones, inflammation, digestion, detoxification, energy metabolism, and a calm mind-and explains his revolutionary six-week healthy-living program. With advice on diet, green living, supplements and medication, exercise, and personalizing the plan for optimal results, the book also teaches readers how to maintain lifelong health. Groundbreaking and timely, THE BLOOD SUGAR SOLUTION is the fastest way to lose weight, prevent disease, and feel better than ever.” (Read more here.)

 

4. Feel Empowered:

This may sound crazy in light of getting what can feel like a death sentence diagnosis.

But, you have answers now.

You can point the ship in a certain direction.

You are no longer floating aimlessly in the see of tests, results, appointments, and doctors.

Sure, you’ll still spend more time and money at the doctors than any person should – but you are focused now. You have a target in mind now.

You can take action now.

autoimmune-disease-diagnosis

5. Shut Down Haters:

Having an autoimmune disease is similar to being a mom in the sense that everything you do, or don’t do, will result in both positive and negative reactions.

I’ll just fast-track you through some of the most concern comments you could potentially hear from haters, so that when the moment comes – you’ll be prepared and maybe even have a snappy reaction:

  • Autoimmune diseases are not real, it’s all in your head
  • Maybe if you lost weight, your pain would go away
  • I watched a documentary that said you got this from eating too much meat (or not enough meat..)
  • I heard that [insert random food, supplement, ingredient, product] can cure those
  • Mindset is everything. Stay positive and you’ll get better!
  • You should pray about it. Why does God want you to have this? (Spoiler alert – God doesn’t.)
  • You’re just lazy
  • Everything happens for a reason
  • You just want prescription meds

You are welcome to print out this list and throw darts at it or burn it in a fire. Go for it.

It’s all garbage.

The fact is, people do not know how to respond to something that they don’t understand.

Some of these responses are from people that genuinely care and just want to help. Others are just ignorant. Some are so selfish that they cannot be bothered to step outside their own lives for one second and show a shred of sympathy.

Prepare yourself for the reality that having an invisible illness will show you the people in your life that are worth investing in, and the ones that aren’t.

Surround yourself with positive, supportive people that just want you to do what you need to do to feel you best and find some relief. Remove those that don’t.

 

****

The reality is that you will have good days – and you will have bad days. Then, you will have worse days.

The progression of an autoimmune disease is not linear. It is often unpredictable and circular.

The endlessness of it can be suffocating at times. But, then, you will find something that will be like light breaking through the clouds.

Give yourself grace. You are not a failure and there is nothing that you did or didn’t do that put you in this position.

There are things you can do that will help and bring relief over time. I hope my suggestions in this post give you ideas, hope, a sense of community, and direction.

Please leave comments below with any of your own suggestions of what I should add to make this even better.

To our health,

E

 

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3 Comments

  1. Dr Saadiqa khan
    July 14, 2020 / 3:22 am

    Thank you for this post. It gave me hope that i was not crazy. Some of the things you wrote about are already my reality. The one that resonates is the point that having this issue tells you who your friends are.thank you for your information.

    • Erica
      Author
      July 14, 2020 / 10:40 am

      You’re definitely not crazy! Having an invisible illness really changes our lives in many ways that others just don’t understand. I have a lot of posts on the blog about natural remedies, supplements, smoothies and other ways that I bolster my own health. Hopefully, you can find something that helps with what you’re going through, too. Thanks for reading and best wishes to you!

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