Autoimmune diseases are frustrating. They can be difficult to diagnose and the people that have them often experience puzzling and confusing symptoms for years before being diagnosed correctly. In the United States the average person sees about 5 doctors and endures 3 years of symptoms before they are correctly diagnosed.
Adding to the frustration is the fact that many people are misdiagnosed before being correctly diagnosed years later. The painstaking process of being diagnosed is frustrating and draining both emotionally and physically.
Receiving a diagnosis of an autoimmune disease can elicit a strong reaction from the person hearing the news for the first time. The fact is medical professional are not equipped to deal with life a changing diagnosis from a mental and emotional standpoint. I vividly remember hearing my own autoimmune diagnosis years ago.
What I remember the most from that moment is the disconnectedness of the doctor who delivered my life-changing news. I also remember the hopelessness and confusion I immediately felt. The doctor delivering the news was cold and matter of fact as if he was reading a newspaper out loud.
Looking back I realize that I was mad and felt cheated because the doctor never offered me the most basic of human wants in a situation like this – hope.
After I left his office I never told my family and friends because I felt an immediate sense of shame coupled with the frustration and dread that I had experienced for years because I knew my body wasn’t functioning correctly. Now I had a name for what I was experiencing but still no solutions.
As a transformational nutritionist I specialize in working with people that have autoimmune diseases and hormonal imbalances. Every day I try to make sure that no one else experiences the dread and trauma of autoimmune disease diagnosis. I have developed a system for my clients to deal with receiving a difficult diagnosis using the following techniques.
After You Are Diagnosed
So you got the news. This is the darkest moment and now is not the time to give up. Use these techniques to shift your mindset to wellness, implement a wellness plan and make your own roadmap to recovery.
1. It Is Just A Label And That’s A Good Thing
People with autoimmune diseases almost always have experienced a myriad of puzzling and confusing health issues for years before diagnosis. Getting a diagnosis is actually a good moment and it is the first step in your wellness plan.
You cannot make a game plan to deal with mysterious seemingly unrelated symptoms, but you can make a plan to deal with a known disease. Remember you just received a label – nothing more than a name. You are the same person that walked into the doctor’s office.
Write the name of your autoimmune disease down on a sticky note and move it around the house. Place it on the front of the dishwasher – I bet it didn’t change the dishwasher at all. This is a powerful thing to observe! Does the label you wrote out change the thing you put it on? I guarantee you it won’t.
My clients have placed their labels all over the place – on televisions, in refrigerators, on steering wheels in vehicles, on dishwashers, in windows – and the things that the label is stuck to never change. Remember that! This label does not change who you are or whom your friends and family know and love.
2. Have The Talk
It is important to inform family, friends, and co-workers. Make sure to tell people around you so that they can support you on your journey. You may be used to hiding or denying your health challenges but this is not the time to hide. Sit down key people in your life and talk with them so that they have a chance to support you in your wellness journey.
3. Play Cards
Use colored status cards made from craft paper to indicate how you are feeling and functioning and place them where the family can see them daily. Some people use traffic light signal colors but you can use any colors you want.
Here is the basic idea – place the card where your family will see it daily so that you don’t have to have a conversation every day detailing how you are feeling.
It’s important to communicate your daily wellness status to those around you, but you should spend as little energy as possible discussing what is wrong. Instead, focus on your wellness and what is right in your life. Here is an example of how to decide what card to place out for others to see.
- Red – Bad, tired, weak and painful day
- Yellow – Some energy today, limited activity
- Green – Feeling good, increased activity
Try placing your status card on the kitchen counter next to the coffee maker so your family can see it. When you get to work put another status card out so coworkers can see it.
It gives people around you a lot of information about how you are feeling and functioning and allows you the freedom to talk about anything else you want to discuss instead of your wellness status. You can change your status card at any time during the day if you need to.
4. Implement Self Care Practices At Least Three Times A Day
Commit daily to experiencing recovery and wellness. Making this commitment to yourself and your body is a basic necessity and not something that you don’t have time for to make it a priority. Set up practices throughout the day to keep you on track. Try these to get you started:
As soon as you are out of bed to meditate and set your daily intention for wellness. Do a body scan meditation to observe how you are feeling and functioning. With every observation during the body, can use the mantra thank you, I wish you well, I wish you health, I wish you love.
When things come up it’s ok – just observe them and use the mantra. The point here is to observe your physical state objectively and not react emotionally to anything you feel.
Eat! Eat whole, organic healthy food. Now get moving! Go outside in the sunshine, listen to music and dance or meditate again. This is the time for a midday rest. Check in with yourself to make sure your mindset and mood are positive. If you are having a hard day reach out to family, friends or coworkers for support.
Start an evening routine. We all do this with our children – dinner, bath, bedtime stories and then off to bed – but we are without a routine. Set your own evening routine to wrap up each day and set your intentions for tomorrow.
A routine will help you sleep better and feel better. I write in a journal each night using the 3 X 3 technique. I write down three things that I enjoyed from the day, three things that I want to release (usually worries or stress) and three things that I will accomplish tomorrow.
5. Make A Plan To Get Well – Set The Intention
After you have told family and friends, shifted your mindset and set in place wellness intentions now is the time to focus on physical wellness. This is where I encourage you to seek out healthily minded wellness professionals. Don’t be afraid to think outside the box of traditional medicine.
Be open to anything. Try massage, acupuncture, counseling or support groups, chiropractic treatments or anything else you want to. It is your body and your journey. It doesn’t really matter what other people think – it matters what you believe.
If you are working with a health care professional feel free to start the visit by stating your boundaries and expectations. Now is not the time to be shy about how you want to be treated. Remember, doctors, are there to treat YOU so take the leadership role here.
Finally, educate yourself about your autoimmune disease. Check to see if there are any reputable books out and ask your health care team if they know of anything you should read or try out.
6. Be Grateful
Be grateful for your life, mind, body, family, friends, job, home and the world. We are all walking miracles experiencing the world together. It’s a magical bliss-filled life!
Don’t Lose hope, Just embrace
I encourage you, no matter when you were diagnosed, to use these techniques to release any trauma from your medical journey and embrace your diagnosis so that you can continue on your wellness journey.
Receiving a diagnosis of an autoimmune disease is difficult but there is hope! Never has science had a deeper understanding of autoimmune diseases and the knowledge we have to treat them is rapidly growing.
Note: Diagnosis of an autoimmune disease is difficult but there is hope!