So, you've been diagnosed with an autoimmune disease -- now what?
I'm hoping this can be a post that points you in the right direction! Whether you've been officially diagnosed with an autoimmune disease, or are in the process of getting a diagnosis for what may be an autoimmune disease, this post is to help you figure out what's next.
Writing this means a lot to me because I was diagnosed with an autoimmune disease (Takayasu's Arteritis) at the age of 14. Much later, I was diagnosed with another autoimmune disease, Seronegative Rheumatoid Arthritis.
The aftermath of each diagnosis looked something like this...
I'm sitting in bed with google open on my phone.
My mind is spinning as it runs through what's happening over and over again.
I read one article about chronic illness... only to click through to 5 more links.
There's a story about remission that I want to read next.
I start to wonder if that'll ever be me.
I think I probably won't have that same luck.
All of a sudden I've landed upon a horror story about the side effects of medication.
Not just any medication though... the one drug my doctor recommended.
The one I started to take this morning.
My breath tightens; that's more likely to be me right?
I'm starting to panic, and I feel so confused.
Why does everyone disagree?
And what are these new symptoms I'm starting to notice?
Is this anxiety or something else that is wrong?
Is it serious?
And what about the words my doctor used today?
About the disease I have?
Did he say it was chronic? Or curable?
I don't remember. Are those words mutually exclusive?
I don't know. Isn't this out of my pay grade?
I'm rubbing my eyebrows as the words on my phone start to blend together....
Getting diagnosed with an autoimmune disease can feel extremely overwhelming. While you may have gotten one answer, a hundred more questions are starting to pop up.
How will this change my life?
What treatment is best for me?
What options are even out there when it comes to treatment?
Are there side effects or potential complications?
How do I talk to my family and friends about this?
While one post can't possibly answer all of these questions, I hope it can point you in the right direction and get the ball rolling. You've been diagnosed with an autoimmune disease? Ok, start here.
--------> (1) Create safety.
Since you've found this post, you may have already done this. But let’s just make sure. It’s important to take a moment to create safety and, more importantly, feel safe when moving through health challenges of any size.
You may want to take a few deep breaths.
Possibly sit on the floor in a closet wearing an oversized sweatshirt and your favorite socks.
Maybe you need to eat a good meal. Or drink a big glass of water.
You may want to try a guided meditation or go for a walk in the fresh air.
Or perhaps you need to sit in nature, feel the sun on your face, and grab a journal.
You could take a deep breath, watch this video, and try this guided meditation.
Creating safety (so that you feel safe) is the first thing I recommend doing when you get big life-altering news like a diagnosis. It’s what I recommend doing when you get a bad test result, unexpected answer, or when you can’t get any answers at all. This is where to begin if you're overwhelmed, exhausted, or frustrated beyond belief.
It’s important to do this first because health challenges ARE exhausting. They're exhausting when you've been diagnosed with an autoimmune disease. They're exhausting when you're struggling with daily symptoms (before or after a diagnosis). They're exhausting if you're challenged by health anxiety (which those of us with health conditions are more prone to).
This is a long, draining, anxious process. You're not alone in feeling that way.
Essentially, if you spend more time inside a doctor’s office or googling symptoms online than you WANT to, then you know that trying to feel good, to manage symptoms, to make sure you simply don't feel worse can be all-encompassing.
I know it is.
I hear you.
I see you.
And I encourage you to FEEL it before you FIGHT it.
To give yourself a non-judgmental moment to experience whatever it is you're experiencing.
Without thinking about how things could be worse.
Without anyone watching.
Without having to get anything done.
It's normal to want to call someone when we’re feeling this way… or turn right to the next expert or book or article we think has a solution... but I recommend refraining. (Even putting aside this post if you must.)
Because most of us don’t know how to sit with someone else’s pain. We want to fix it. To make it better. And this? This we can't fix with a snap of the fingers. This can't be shoved into a box with a pretty bow. Health is messy. Illness is messy. Grief is messy. Give yourself the space to be alone for a moment – and breathe.
After a few hours or a few days -- once you've given yourself enough time to feel and you'll know when -- you may notice a bit of energy coming back. A bit of gratitude flowing through.
This is where you may already be... You’re ready to dive in and tackle this challenge head on.
Yes? Let’s keep going!
--------> (2) Do your research.
Start by gaining a general knowledge and understanding of autoimmune disease.
What is autoimmune disease?
What does it mean to be diagnosed with an autoimmune disease?
How does autoimmune disease affect the body?
How may autoimmune disease impact daily living?
What are common treatments for autoimmune disease?
Consider starting with this post, or this one, or even this one. These are general posts on autoimmune disease.
Then, when you're ready, move on to your specific diagnosis.
There are over 100 confirmed autoimmune diseases so look for yours and educate yourself. Move to books or organizations dedicated to sharing knowledge about your symptoms / condition. Look for the people who share this information in a relatively easy, digestible way.
>>> Important side note: You don't want to get overwhelmed here. Nothing needs to change overnight. Take your time -- and extend a lot of grace to yourself. If you get overwhelmed at any point, no worries. You are human. Go back to step #1.
>>> Second side note: Gather facts and better understanding about any results or information you've received, but try to steer clear of stories, chat threads, and personal blogs. Staying away from these can be SUPER hard to do, but spending at least some of that time writing in a journal and reflecting on how you feel will be much more beneficial for your mental and emotional health.
Over the course of a few days or weeks, do your best to answer these questions:
What does the condition I was diagnosed with do to my body?
How does it affect it?
What are the symptoms I've experienced?
What symptoms might I need to look out for?
What should I / do I consider a "flare"?
Should I be seen by a specialist? A team of doctors?
What are traditional treatments for this disease?
What injections, surgeries, or medications are recommended?
Are there any "natural" treatments for this disease?
Can I find studies for these treatments in literature?
What about experimental stories?
What are the potential side effects of conventional treatments?
And the side effects of natural treatments?
How might this disease progress? What should I look out for?
What do I need to be sharing regularly with my doctor / team of providers?
Let this take you as much time as you need. It's important to feel properly educated before making a decision. And ultimately, you want to feel equipped to trust yourself and advocate for yourself throughout your treatment.
--------> (3) Compile your wellness round table.
After you get educated about your condition and the potential treatment plans, then you want to talk with your loved ones and your primary care provider.... and build your wellness round table. Build your team.
Which doctor(s) do you trust and vibe with most?
Which treatment plan(s) do you feel drawn to?
Do you want to use a blend of conventional and non-conventional treatment?
If so, have you found the different service providers and professionals you want to work with?
Do you want a therapist to help you adjust to illness?
What about a nutritionist to help you explore any potential allergies?
How do you want to reduce stress in your life and on your body?
As a patient for over 14 years and a service provider in this industry for 3, I've explored all kinds of conventional and non-conventional treatment methods. I've also read a lot of stories and books. Through those, I've seen folks I trust and respect claim that the AutoImmune Protocol is the only way to go when it comes to naturally easing symptoms. At the same time, I've seen other experts mention that they've never ready a single study that has sufficient proof dietary approaches work. I've seen people share that EFT was essential to healing... or a consistent Reiki practice. I've read stories of faith and stories of medical studies. In other words, I've read about many different approaches to healing.
And since I'm not a doctor, I don't know what's right and what's not. Instead, I take from all of these stories, studies, and experiments that we each require a unique combination of care, including self-care and professional-care.
In fact, this is why I've designed The Wellness Boulevard as it is. I believe it's important to have access to a large variety of care and treatment. To explore what might happen working with nutrition experts, life coaches, therapists, EFT practitioners, and Yoga and meditation teachers... as a complement to (and under the guidance of) the professional care we receive at the doctor's office.
You see, when you're diagnosed with an autoimmune disease, you have to find YOUR round table. There's no one size fits all. You need a taste of treatment plans -- to hear stories of others with similar diagnosis and potential care options (both Western and Eastern) -- and then pick the things that feel best for you. To look for the approaches and experts you believe in, trust, and enjoy.
One of the things we learn when diagnosed with an autoimmune disease is how to advocate for ourselves both inside and outside the doctor's office. Compiling a wellness round table is one thing that makes doing so a whole lot easier.
--------> (4) Build a support system.
If you've been recently diagnosed with an autoimmune disease, you may feel very alone. At the same time, all you really want is to feel validated, heard, and cared for just like anyone else.
So, after you build your professional team through your wellness round table, build your personal support system. While your friends and family might not yet know how to support you in this season, give them time. And if needed, give them explanations and insights into what you're feeling. Use this blog post to get you started.
Then in addition to talking with family members and friends, look to social media, personal blogs, or Facebook groups. These platforms can provide a lot of comfort, so long as you follow the people who leave you feeling good. Find the ones who have a story to share of their own, who seem to share ideas you resonate with, and who talk about topics that relate to your struggles and desires.
Our phone is often the first thing we grab when we have a few minutes of downtime. Sometimes, just a reminder to take a deep breath is helpful -- and so is seeing that there are people out there, people other than you, trying to figure things out too.
You do not have to do this alone.
And, remember. This is temporary.
A diagnosis isn't who you are.
It doesn't define you.
Or determine what you can and cannot do from here on out.
Want more personalized support as you navigate autoimmune disease or chronic illness? Click here to join The Wellness Boulevard (a community with monthly workouts, coaching videos, tested resources, and guest expert classes) or click here for a free 1:1 consultation to help you put together your wellness round table.