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I hear people talk about their “new normal” a lot when it comes to living with a chronic condition. I hate this expression. I understand it, but I still hate it. There is nothing normal about what we go through, living day to day in uncertainty of which ache or pain will slow us down or what symptom will stop us in our tracks.

If it’s new than it’s not normal…it’s new…it’s different than it used to be! I don’t live with a new normal, I live with a changed normal and I don’t happen to like it. Living with a “new normal” has an air of giving in and I’m not willing to give in.

Of course things have changed for me since my diagnosis. I am not the same in a lot of ways but I am also still me, so saying that I am living a “new normal” is like letting go of who I am. I’m not willing to do that either.

Yes, I’ve had to accept limitations. Yes, I have lost parts of me that I miss. I get tired a lot faster. My mind doesn’t work as fast. I forget things. I can’t find the words I want to use. I live in some sort of pain all the time. I get short of breath easily. Yes, I am a modified me but I am still me! I’m still in here, inside this altered body.

Things have changed but this isn’t normal and I won’t say that it is. Maybe they will never be what they used to be. In fact, I know they won’t. But nothing in life is promised to stay the same. Everything changes. So, if everything is always changing aren’t we all always in a state of “new normal.” And, if that’s the case, then I am right to think it is a stupid expression.

I know there have been changes in my life. I can speak to the the fact that I have to do things differently. I can acknowledge that I have to accept these limits in my life now but I won’t ever call them normal and at this point they aren’t really even new as I have been living this way for four years now.

So, have I changed as a result of my sarcoidosis? Yes. Is it normal? No way!