I have a lot to say

I have been living with this illness long before I knew what it was.  More than once I was afraid I was crazy or a hypochondriac because the doctors couldn’t find out what was wrong with me.  I eventually found out I was suffering from several health issues, including chronic acid reflux, slipping rib syndrome (caused by a life time of coughing from the reflux), migraines and PsA.
That is quite a list just to tell people about if they ask what is wrong with me.  It’s down right embarrassing.  What is also embarrassing is the pity I see in faces if I do share.  I don’t want pity, please.  I want understanding.  Sympathy isn’t necessary.  This illness is serious yes, but its manageable, and I am a fighter, and I am not about to give in.  Telling me I am in your thoughts, or you are sending me positive energy, or offering me a ride to the doctor, those things are absolutely lovely, and I welcome such gifts.  Telling me you have your whole church praying for me, or that you are crying for me, makes me down right nervous.  I have a great life.  I just live with pain.  I have some close friends with cancer who appreciate that I just treat them normal.  It seems bizarre, how else would I treat them.  But I get it, and maybe thats one reason I have stayed silent for so long.  I LOVE support, I crave understanding, but I am a strong woman and pitying me will do nothing to nourish my soul, so I most graciously decline it.

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2 Comments

Filed under Health, PsA, soul

2 responses to “I have a lot to say

  1. Tinka…. I accidentally logged into Facebook in the middle of the night, saw a link to your blog, and have spent the last hour and a half reading, with tears running down my cheeks. I could probably comment on each and every post (since i live with several auto-immune disorders as well, and the simple act of explaining my lack of energy to people exhausts me sometimes), but I chose this one. I don’t think many people comprehend the difference between being understanding and being sympathetic. I don’t want people’s sympathy either, but I need them to understand why I can’t always do the things I want to. I need them to grasp that I struggle with my own self-judgements over my limitations and that I don’t need them to point out to me my “failings.” Your blog is honest and beautiful and inspires me to keep my head up and strive to be as normal as possible while not damaging or denigrating my body. I plan to follow your journey and share when I can. You sent me a couple touching messages last week, after I shared with you that my daughter was in a dark place, that also made me tear up because, in a graceful and direct manner, you were able to get to the heart of what needed to be said. Without self-consciousness, without hyperbole, you related your understanding of the situation and I felt less alone. That’s the beauty of what you’re offering here to all of us who suffer from invisible disease.

    • I am glad the blog is resonating with you. Sometimes it feels a bit too naked to be so honest, but I am doing it anyways. So many of us, including myself don’t speak much about our illness outside of immediate family, because we don’t want to sound like whiners, and we don’t want to dwell on it more than we are forced to ourselves. Too often even our immediate families don’t understand. It feels great to know that someone else completely understands even while at the same time wishing they didn’t feel the pain that makes understanding so natural. Let me just say, when they days seem impossible and you reach out your hand and no one grabs it, reach it my way, and know you have a friend.

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