For those who have had any experience with pain it is well accepted that it changes you. No matter who you are or how immutable you think you may be, after spending time living with pain it changes who you are at the core. No exceptions.

I have often marveled (even grieved) at how much I have been changed by my daily battles with pain, and various other challenges, I scarcely recognize the person I was compared to the person I am today. Even the most stoic amongst us will no doubt experience this, even if their challenges are not as noticeable or as great. It still changes us.

During times of flares and relapses the daily struggles are transformed into Herculean challenges which takes every bit of you emotionally, mentally, physically and financially to endure them. During these times I find myself feeling completely disconnected to my surroundings, my friends, my loved ones and even myself.

I have wondered if other Autoimmunes experience the same?

Like a soldier in the midst of war and completely engaged in battling the enemy, I am in the trenches for my health and fighting hard. The casualties are numerous and the first to be lost has always been my connection with my life.

Since it is so hard to explain to others what this war is like I simply don’t tell them. I have to disconnect myself from them as any explanation would be utterly lost on them. They simply can not understand what this is like for me and I can’t adequately inform them.

Much like a returning soldier who has experienced the horror of wars, there are no words to convey what it is truly like to those who have never fought, and it really only has meaning to other veterans, I can’t seem to convey this to friends and loved ones who may be curious as to how I am and so I simply say nothing. Disconnect.

After a flare or relapse settles down a little I find it very hard to resume the normal course of my days again and feel quite lost and emptied. It takes time for things to settle again and I feel completely disconnected to my normal life again.

For those that knew me prior to my illnesses taking over it is quite surreal for me to interact with them when they dearly want that the person I was to materialize and can not see that she is gone and deeply changed. They cling to those earlier memories of me which only serves to make me feel even more disconnected to them and myself.

It is often why I don’t have much interaction with them at all these days as it is unbearably sad for me at times to constantly mourn the person I was and lament the person I am now. Often the person they remember is still inside and has been in prisoned by this damaged physical shackle. I am disconnected from my past and present.

To try to reconcile the two is a mammoth task that I have not yet mastered but dearly hope to someday, if at all possible.

One way I have been able to cope through these times has come in the form of someone close to me who not only knows me on a very deep level, the woman I am deep inside, my hopes, character, personality and who also accepts my current persona and can help mend the rift and ground me when these two people (me) become disconnected internally.

When the war is raging and I become so lost I find myself free falling, spiraling, lost and without focus, like the earth is moving beneath my find and I am straining to stay upright. ]they] catch me and offer direction for which way to look. [they] reach in and grab hold of me when [they] can see that disconnection taking place and although [they] may not ever know what I am truly going through, [they] do know me.

Without this I would not be able to put the pieces back together and connect the dots alone. I just can’t do it. I hate that I can’t do this for myself but am also deeply grateful that I have someone who can in the meantime. My thanks and love for what [they] do many times must remain unspoken as there is no way to truly express it, but I also wonder if my fellow Autoimmunes experience these same things in their journey?

We all need someone to help put us back together emotionally and mentally when our physical selves are so damaged, uncontrollable and unpredictable and one of the hardest parts of these diseases is not only losing our bodies to them but also trying not to completely lose ourselves.

I hope you all have a person whomever they are. Someone who truly knows you and can help you reconnect and if you don’t have them currently I urge you to take the time to find them and give them the tools of truly knowing you on a deeper level so they can help you find your way home again even in the darkest of times.

Gentle hugs,

Trish