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Invisible Illness: What to Say to People and Practitioners
Rough Transcript (listening is best)
Hey friends, today we are jumping in on invisible illness. I had a question recently about “what do I do when the doctor says I'm fine and I know I'm not?” and I’m going to really have to reel myself in for this one because it can really put me on my soapbox - not at the victim of this but at the conventional medical community and their view on all of this invisible illness - and really on our current broken medical system in general…
What this is phenomenon is often referred to is an invisible illness. Even though they are invisible, they are real and they are common, more so than you might think. And so often invisible illness is judged, misunderstood, and overlooked by peers and practitioners. In today's episode you will learn:
- What is an invisible illness?
- What to do when your healthcare practitioner tells you there’s nothing wrong
Welcome if this is your first time listening - I’m Audrey Christie - I’m a functional and integrative nurse nutritionist and energy medicine practitioner. I help women start their very own Autoimmune Revolution so you can stop chasing symptoms and learn how to heal your body from autoimmune disease.
Before we dive in, A quick invite I have for you is to jump on the Autoimmune Revolution waitlist if you are interested in DIY’ing your own revolution with my help and the support of a small community! We will be opening registration again very soon - get on the list for all sorts of perks and love at audreychristie.com/autoimmunerevolution
Good grief I can get on a soapbox about this so I am going to try to stay chilled down and not get off on a bunch of tangents and deliver this info for you without digressing too much. There is just so much to say about invisible illnesses and all of the care or lack of care around it.
Normally, I would share a story about one of my clients and the practitioner they had an issue with or even their family member. Interestingly, I discuss this with clients in their very first appointments - who will be your biggest cheerleader on this journey, and who will be your biggest critic? It is such an important topic to discuss and understand your support system or lack of support system when designing your personal healing plan. Today we will focus primarily on interactions with practitioners, and I’m going to pick on docs here but I have seen it elsewhere too - in the holistic world as well- it's a really pervasive problem when another human’s experience is dismissed. And usually, it is code for I don't know what's wrong or how to fix it. It happens way too often and there are too many stories to tell.
I will say this though - just about every person I speak to, every client, but also the people I help on social media and in the Wellness Circle have been through this. Even I have several personal stories with this same issue.
The first experience I recall I was in 5th grade - and it took a year to find someone to listen. I was in and out of children’s hospitals for a year, and I still remember the doctors pulling my parents aside and asking for psych consults because they weren’t smart enough to figure out what was going on with me (and that isn’t a nice way to say it I should say that medicine wasn’t advanced far enough or they didn’t know better and maybe that is the truth but from my perspective then and for a long time it felt like they weren’t smart enough or willing to see beyond their limited belief). That was the first time I experienced this phenomenon of an invisible illness but not the last…the bright side of that was that I also remember my parents sticking up for me and advocating for my care.
And just to complete that little trip back in time, my parents were finally referred to an immunologist that was able to tell me what went on - a brilliant physician and what I remember as a shining light at the end of a very dark tunnel.
So one thing to remember is that it can be hard but don’t ever give up until you get answers, more on that shortly...
What is an invisible illness?
Some of you may be wondering what is an invisible illness? Especially if you categorize yourself as having an autoimmune condition or some other type of chronic illness - or maybe you don’t have an official label (that’s okay too because we are going to talk about that next week).
Maybe you are thinking, "but Audrey - my illness isn’t invisible I have psoriasis." And yep that may be true BUT it can affect you even when you can’t see the issue - and how many times is it truly visible between clothing and cover-up? How many times does it affect your energy levels even if your skin isn't flaring? I won’t harp on it too long here - the definition of an invisible illness is simple enough:
An invisible illness is an umbrella term for any medical condition that isn't easily visible to others. This includes chronic physical conditions such as autoimmune diseases, arthritis, diabetes, fibromyalgia, and others — but also covers mental illnesses and other neurodiversity like ADHD and autism.
If you are listening to benefit a member of your family, first of all, you are amazing! And second, you may not know this but it is important: life with an invisible illness can be very isolating. If you have an invisible illness, you know this isolation because you live it.
Invisible illness sufferers are conquerors and fighters and survivors all at the same time and every single day. I’m so determined to teach as many as possible how to heal from this so that you can stop fighting and surviving and thrive.
Explaining Invisible Illness
It can be labor-intensive to explain your illness to those around you, strangers or family members. And just so you know, you don’t particularly owe an explanation to anyone. Often, I hear that the social pressure is real enough that you have to. There are people that don’t or won’t believe in your condition because you are visibly showing it or it’s often met with wide-eyed expressions or awkward silence or the ever polite. “Oh, yeah my aunt has that.”
I tell people frequently that it isn’t anyone else’s business what you experience with an autoimmune disease but one thing that really gets me is when people say your condition, symptoms, diagnosis, or experience isn’t real.
When this happens with a layperson - it can get under your skin, and it can be hard to brush off people, we will be talking about some "come-backs" for that in the Wellness Circle. What is worse is when you go to a professional, any professional seeking help, and you are brushed off.
Invisible Illness and Practitioners
I have had the question asked too many times to even count, “how do you get your doctor to believe you?”
And I hadn't experienced myself, and talked to 1000's of women that have experienced it - I may be shocked. It's not an old problem - it's not a new problem - it's an ongoing problem a NOW problem.
The simple answer is if your doctor doesn't believe you the first time, that is a sign that you don't belong there. It's a sign that you must get to work finding someone to believe you, you have to open your mind and eyes to new ways and possibilities of healing. I don't care if it is an invisible illness or visible symptoms your doctor should never tell you:
- your symptoms are in your head
- your issues are not real because they can't prove it with bloodwork
- that you are incapable of fully healing (or that your diagnosis is not heal-able)
- that you must wait for a diagnosis to begin the work of healing
And I will even add to this list - that your practitioner should never tell you - take this pill or treatment forever without an exit strategy or at least taking the time to really work through the options and risks with you. They should also re-evaluate you twice per year on your current medications.
I see it over and over again, women held in a holding pattern awaiting some magical combination of labs to get a diagnosis and meanwhile wasting all of this time waiting.
Stop. Take action. A diagnosis is just a label, it does nothing for your healing benefit. There are practitioners out there, myself included, that can help. And if I can't fix it, I will help you find someone that can. I have helped 1000s of women in my 1:1 practice my group programs and even just with the free stuff I do in my groups and on this podcast and I never once have diagnosed any person with anything.
I say this in every episode, chronic disease, autoimmune disease, invisible illness is capable of being healed. You can achieve wellness, it is possible, even in the most impossible feeling situations.
More questions about invisible illness?
If you have more questions about invisible illness and how to work with a practitioner be it conventional functional holistic etc. I would love to have join us in the Wellness Circle, my exclusive and free community to help women pursuing holistic wellness, body, mind, and spirit and discussions around the Autoimmune Revolution Podcast and even some free office hours on Fridays to get your private questions answered - friends chronic disease is preventable and autoimmune disease is capable of being healed or put in remission (and don’t let anyone tell you otherwise you deserve to feel good!) You can get the direct link on the show notes page or at audreychristie.com/facebook
When you join the free Wellness circle you will also get my free guide to Kickstart your Autoimmune Revolution - it has 5 steps to get you started on your very own Autoimmune Revolution and is newly updated to contain a safe approach to the first phase of healing I use with many of my clients working on energy and drainage.
Also, I want to extend one last invite to jump on the Autoimmune Revolution waitlist - I will be opening up a second registration round and the waitlist gets first dibs on limited slots AND lots of other perks. if you are interested in DIY’ing your own revolution with my help and the support of a small community! This is your chance - get on the list at audreychristie.com/autoimmunerevolution
You can get the direct link on the show notes page or at audreychristie.com/facebook
To wrap this up...
To wrap this up -
Living with an invisible illness is frustrating and isolating and so many things - I hope that through this episode you have learned that you don’t owe anyone an explanation and that your practitioner certainly must believe you OR you must find a new one.
Remember that I am always rooting for you friend and I am so grateful for you listening! See you next time!