My Advice to the Newly Diagnosed

wp-1581892766628.jpgEveryone that is here reading my blog, is doing so for a reason.  Maybe you are also an autoimmune warrior, or maybe you are a friend or a family member of someone recently diagnosed.  Maybe you are one of my own family members wanting updates.  There could be any number of reasons that you have found your way here.  Regardless of the reason, I am here to help others that are being affected by the autoimmune life.

Let me start by saying that I’m sorry that you even need this kind of a blog.  Regardless of who you are and why you are here, you’re likely going through the same emotional roller coaster as the rest of us.  This is a tough life and an autoimmune diagnosis is a hard pill to swallow.  Having an autoimmune diagnosis will affect virtually every single aspect of your life until you take your last breath.  There is no cure for autoimmune disease, only treatment.

Get used to medication. You will likely be on medication for the rest of your life.  The symptoms can often be treated, but you will have an autoimmune disease for the rest of your life.  It took me over a year for that part to sink in.  I personally am no fan of taking medications, but now they are required to keep me alive.

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Get comfortable with doctors.  You will need to see doctors and specialists for the rest of your life.  Do your best to get used to that.  I absolutely hate going to the doctor’s office, but suddenly I have to.  I want to live my life to the fullest and stick around for my children and to possibly see grandchildren one day.  The only way that will happen is if I go to the doctor and do what they tell me to do.  (I still struggle with this part).

wp-1581892766586.jpgFind support!  Whether that means going to counseling, or just having friends and family members that are truly there for you, it is imperative that you find and keep support.  The autoimmune life is a very lonely one, and having the support of my husband has been a game-changer.  I’m blessed in that respect, but sometimes that’s not enough.  I recently had to start counseling as well.  There is no shame here, I go to counseling with a smile on my face because I know this is what helps me.

Educate yourself on your disease(s).  When I was first diagnosed, I read every single thing that I could get my hands on.  I joined Facebook groups with others going through the same or similar things and learned everything that I could.  I went from believing that I had a death sentence hanging over my head to meeting people that had lived for 30 or more years with the same disease that was supposed to end my life in less than 10 years.  Now when I go to the doctor’s office, I rest assured knowing that I have enough knowledge to actively participate in my own health care decisions.  Knowledge truly is power!

Exercise.  This piece of advice is really a catch 22.  Yes, we all know that exercise is one of the best things that we can do for our bodies, but in the autoimmune patient exercise itself can put us into a flare.  Learn to exercise in moderation.  Do not compare your exercise to others.  Do what you can, when you can do it.  Start small and give yourself a pat on the back for even the smallest amount of activity that you are able to do.

wp-1581893744501.jpgEat right.  This is another tricky piece of advice here.  There is no cut-and-dry diet that will help us all.  For some people autoimmune patients it is recommended to follow the autoimmune protocol.  For others gluten-free eating is imperative.  In my case, I don’t need to follow either of those, but I have had to cut out the foods that I  know cause my body to go into a flare.  Considering that one of my diagnoses is an autoimmune liver disease, I have to follow a liver healthy diet in addition to avoiding those foods that I already know put me into a flare.

Be nice to yourself!  Regardless of your situation and the disease(s) that you have, know that it is not your fault and you did not do this to yourself.  You were dealt a crappy hand, but you still have to play it.  Don’t beat yourself up and know that your worth is absolutely not tied to your health.  You are a beautiful human deserving of all of the love and respect in the world.  Don’t let anybody take that from you.

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