But you don't look sick......

Most days as a celiac I struggle through, I push myself to get up, get dressed, do my makeup and hair, get working, and doing my best for my family yet I feel like the walking dead. I am barely surviving and some days I just can’t keep pushing my body and I have to cancel appointments, meetings, get togethers no matter how much I was looking forward to this because my body and my health is screaming for my attention. When I ignore it, it has a nasty way of making me stop and listen. Sometimes it’s in the form of excessive exhaustion, migraines, horrible joint pain, bathroom issues and that’s just the beginning.

Did you know that if you have one autoimmune disease you have a 25% chance of getting a second autoimmune disease. And, according to Dr. Gerald Mullin from Johns Hopkins, he said that statistically somebody with an autoimmune disease they are at risk for a total of 7 autoimmune diseases in his or her lifetime. Why is that? Why would that be? 

The real answer that no one wants to hear is that we have to learn how to turn out the fire that is burning in our immune system instead of constantly refueling it. We have to get our bodies to stop attacking itself, that really is what an autoimmune disease is. It may come in different versions or forms and there are currently approximately a hundred different autoimmune diseases out there. Most antibodies of an autoimmune disease can brew in your body for years before you receive an actual diagnosis. Now does that mean that you are predestined to get these autoimmune diseases? The answer to that really depends on you, on your commitment to your health, your body and to how you live your life, every single forkful will determine if you learn to put out your fire or if you constantly stoke your immune system’s fire.

Understanding this and actually applying this are two very different things. So many of us don’t take our diagnosis seriously enough and ...

  • we pretend like this disease will not stop us
  • we pretend like this disease won’t change us
  • we pretend like this disease won’t force us to slow down
  • we pretend like our health is no longer an issue
  • we pretend like we are superwoman or superman anymore because quite frankly we simply can’t do it all without healing our bodies first.

Learning to heal our bodies takes time, in some cases even years of making better choices for your health, years of learning how to slow down, years of educating ourselves on our disease and ultimately preventing additional diseases. It’s an understanding that this is so much more than switching to some gluten free packaged foods. Healing is truly a process. Going gluten free is merely the first step.

Beginning to heal comes in all shapes and sizes and it may look like learning to stand-up for yourself for the first time, learning to stand in the truth that this is a life-long disease and there are no shortcuts to your health, learning to listen to your body and learning how to find a balance between what you want to do versus what you really can do. 

So yes, I get that to the outside world I may look 100% fine, I may smile politely and go about my day, some days barely making it through; but, that doesn’t mean that I feel fine. That doesn’t mean that I have the energy or even the will to do make it through the day let alone do what you think I should do.

I am doing the best I can with this disease and yes I know it’s an invisible one. You cannot see my struggles, you cannot see my pain, or the nightmare that some days are and quite frankly I’m not sure I would ever be that open and honest with the most intimate, horrible and scary details of my health because they would serve you no purpose. You have to live this, to truly understand this. It would be so much easier if my disease was an open wound and you could physically see my pain. But my pain happens on the inside, to my intestines, to my joints and to my brain mostly.

I  have to look to the future, I have to look forward to a day when I am healed, healthy and vibrant because well if I don’t some days the reality of the disease feels like a weight I can no longer hold and I can slowly drown in my sickness, my pain and the insurmountable task of being whole again if I'm not careful.

What I need from you, dear friend is your patience, is your love, your understanding that some days my body require more attention than I ever thought was possible or than I could have ever imagined. When I have to break our plans, please don’t take this personally it really has nothing to do with you and everything to do with my body. I treasure you (or I wouldn’t be even trying to meet you) and the time that we have shared together, hell some days I cling to those times to get through my ugly days.

What I don't need from you, is the comparing me to someone else who you have heard is doing great and doesn’t have all my issues. Please stop saying I don’t look sick as if miraculously expecting me one day not to be. I use to wish that too a long time ago too, but I know I have a ways to go. If you really want to know how I’m feeling look at me, really look me in the eyes - you’ll see the pain that I won’t tell you about, you’ll see the struggle that I am so over talking about and feeling, you’ll catch a glimpse of my own private hell. But, please understand that not talking about it and not letting you in all the time doesn’t mean I’m not still struggling every day. My new motto has become tomorrow will be a better day, because well it has to be. I won’t survive this any other way.