Identity, Identify & Beyond

{ Originally posted on Barefoot Baroness February 10, 2011 Re=posting eher at fullCircledMe  so all  health posts on one blog. }


I was reading another blog, a very different kind of blog than I have been accustomed to coming across.  one of his posts got my mind a buzzing “My glamorous, More Interesting Clinical Identity”

This post  stayed with me even once I had moved onto other things. I could not shake the thoughts that were flooding my own mind and connecting with that he spoke of.  For days, and now into a few weeks I have not been able to shake the thoughts this post provoked. But in different way.

Before I continue any further let me give you my point of reference‘s link:

This incredible anecdotal clinical session brings to the fore front of my own mind that although my circumstances are different ( are not they all?) I am different from his client that he speaks of here. But I get it. I see it. Give some people a way to define themselves when they have discovered little else about themselves and a new creature is born.
Albeit Dr Micheal’s post refers to Mental Illness  in this case I still get it. I am relating his post to physical illnesses. I think the two can mirror one another so for me I am allowing this article speak to me in this way.  Body & mind. So I could not shake what I’d read. It stayed with me even long after closing the lid to my laptop. As I said weeks later its still with me.

Having been (and currently still am) a member of the Doctor’s Appointment Club for the vast part of 28 years and participating in support groups of many forms naturally I come across others who like me live with a chronic illness. I hear them talk amongst themselves, including this lady with hair to her hips,  and skirts to her bare feet. While the book is in front of me open to page ?? my mind wanders as I listen to their vivid descriptions of themselves in this doctor‘s waiting lobby. Descriptions of their pain, their fatigue,  their husband and families, theirs UN-acceptance of the intrusion in their lives, their whatsoever…. I wondered if this the only way they see themselves.
Maybe I should not hide it  from others when I am in severe pain, maybe when my symptoms are up to no good I should be sharing this with all to hear.  Allowing myself to be part of my outside social circle when I hurt so much concentrating and focusing on a conversation is not possible. Hmmmm??… I think not. I think that I am far more “Emotionally Intelligent“. And I know that I am much more than an illness that has invaded my body. Uninvited.
I am not my illness. Yes I am not always well, I have a chronic illnesses, I have chronic pain and fatigue. I get it. My family gets it. My close friends get it. These people are more important to me than me being ill. I hate that my symptoms affect them. But they get it. And they get I am doing all that I can to manage my life despite having this illness that happens to disrupt my life on a regular basis. It is what it is and nothing more.
I need not address or announce to others that my body bares the scars of past surgeries that have left me often fighting for some sense of comfort. Feeling pain anywhere on a scale of 0 to 10 (0 being no pain, 10 being the worst) everyday of your life is having to re-learn how to navigate your life through the sometimes wild seas of everything that comes along with being in pain everyday. But should I wear some kind of badge? Some kind of “Comes with Warnings” label? Would you know walking past me in the street?  No, No, & No!

I know when we do not have all the answers, and  it can be tough on loved ones. For that I am sorry. I wish for them to find ways to manage their own thoughts and feelings on this matter. But I am wise enough to know that this is their own baggage, if you will. Not mine.
This has nothing to do with being right or wrong. My reluctance to share or display my symptoms to those who have no need to be in the know is spot on. For me. I am not comfortable with people seeing or even knowing about the times I am down because I am unable to cope or manage well. Sometimes chronic pain levels take me to a dark quiet room where I alone without any distractions can get a hold again of my pain cycle. Through much-alternative therapies such as imagery, meditation, yoga, relaxation techniques, to name a few help me get grounded again. Sometimes I am not able to get a hold of the cycle as fast as others, yet I have learned to not beat myself up for this and to continue instead and follow the processes that I trust will work. And if that all fails I turn to prescription meds.  But this is really a very private time. This is not how I want others in my life to see me. This is not at all how I want to be known. This IS NOT MY IDENTITY!

This is not who I am!

I am so much more than a diagnosis in a chart. Even those who are part of my team that help me manage my illness can see beyond the medical jargon and look me in the eye. I refuse to be placed or even to place myself into a category of any kind. I have never liked “labels” and I am not starting now.

Defining one’s self by any one or two things can be dangerous. Being labeled, or labeling yourself can be an emotional suicide. Seriously. If I should start thinking and referring to myself in terms of just my medical diagnosis I’d be in trouble. How on earth could I see anything else beyond?

I have too much to do, too much life to finish on this planet. I refuse to waste one more breath than needed on the illnesses I have. They are there. Okay I get it. I can not ignore the many faucets of my symptoms.  But I react in a much different way today than I did some 28 years ago. I know now that to have a knee jerk reaction to a flare-up will be my undoing. I make things worse. Calmly and with great spirit I know what to do and I do not over react. In a matter of hours to days I will be okay. Even if my days are not as “perky” as I would prefer them to be I am grateful to have the wisdom and learned methods of coping with flare-ups now. They are part of my life, but they are not my life. They are not me. I am not my disease.

I get that it’s easy and sometimes maybe even comfortable to define yourself by what your mind and body may have manifested. But this is just all part of life, is it not? This is all part of living and having looked at the alternative long ago when I first began this journey of chronic illness I’ve decided it’s so worth it. This life of mine will be final one day, yet in the mean time I plan on creating so many others ways to be defined by. Anything else but an illness.

I am a woman of means. Many means. A woman who loves fiercely & hard, who cherishes life’s precious moments for what they are, lives for this generous moment and stays mindful of only the now. This is how I would like to be defined. This is just part of who I am. This is how I choose to identify myself. When I meet a new friend I do not shake their hand and say, “hello, I am Illness, I am in pain”. How absurd!

This one little Ole post from Dr Michael really got my mind a buzz with his topic. Like I said above, he was referring to Mental Health but I so believe in body, mind & spirit are connected, not separate from themselves.  I know this theory works both ways. So I am sure he will not mind that I twisted his post to fit my thoughts, that his words provoked, and his clinical antidote to fit a physical health. It’s all relative after all, yes?

I am a grateful woman who has a chronic illness & diseased spine. So be it. Who that has lived 5 plus decades that does not have something a miss? I am grateful for my illness and the pain I have encountered for 28 years as it has taught me so much about myself, about this world I call community that I live in, and live with. I am most grateful for how in tune I was forced to become about my body. I am grateful for the spiritual wisdom that I have garnered through-out the years in finding ways to cope. I am no different from anyone else and for that I too am grateful.
I am a woman of substance.  I am passionate. I love fiercely and I wish for all those in my world to be content and happy.

I am not my illness!

Nor will I ever choose to be.

©tjhelser 2011

20 thoughts on “Identity, Identify & Beyond

  1. Hi BB, great post! Like you, I refuse to be identified as “the woman with the illness where…”. I hate being defined by my condition and even though I’m now three years into it, I refuse to let it be my central identifying characteristic. I’m still Pam (whoever that is!) but I’m not “Pam with….”.

    • Whoever Pam is.. I happen to like her very much. I think we are so blessed to have this knowledge about ourselves I am grateful for this So although I am not all defined by any illness, I am grateful to have these experiences to continue growing. to be whoever this Baroness is…
      … Thanks Pam!

  2. This is a fantastic post, and you have an attitude that humbles me. My some time therapist often gives me a spiel on not “thinking of myself as a patient.” Which, as it happens, I very rarely ever have, and now never do. But for me, the illnesses I deal with are mental. And while I don’t think of myself as a patient, I really do need to learn when to be vocal about things having to do with my illnesses. Telling those who know me well that I am feeling anxious or upset could prevent episodes from progressing, or at least prevent hurt feelings and long explanations later.

    I don’t think you need to tell everything to everyone. You have obviously learned wonderful management skills, and you aren’t going to dead lift a 50 lb. box of books when you are in pain.

    You are absolutely right. You are not an illness. It is just one of a million other things in your life that has been thrown at you. And you have done an admirable job of catching and fielding the play.

    • Hello Ruby,
      I’m so glad to see your comment! I always look forward to you. You are so right that we don;t tell everybody everything. I have leared to be very select in who I share my whole story with even.

      And we all deal with things differently. For anyone to say that “This is the way**** should be dealth with.” That just would be so hard to do, to comply with since we all come from such different histories, which cannot but help give us all different belief systems.

      Thank you for your belief in me, that means so much because rarely do I hear praise for how well I am coping. Its the greatest gift someone with any kind of illness can receive.

      It seems Ruby that you are doing pretty well too, struggles are part of your success sweetie. Its how we move past one hurdle on the next. Its about the journey I so often say, not so much about the destination. To be able to enjoy at least part of your journey is the healthiest thing you can do for yourself, and for those in your closest world. For those out side your world; its truly none of their business and I find that those who believe it is have alterior motives and agendas.

      Hope that you are finding a way to be kind to yourself. When dealing with an illness of any lind its really important that you be important enough to yourself to be especially kind.

      • I had this very intelligent, well thought out reply initially, and then your sweet, wonderful words got to me, and I teared up and forgot what I was thinking. So thanking you for your kindness and empathy will have to suffice.

      • Sweetie, you have touched me already so deeply with your sincere words. I can acyually feel your sincerity if that makes any sense.

        Thank you, Just keeping an eye on one another, watching ourt for one anothers well being is what we can do. Its what the WWW’s most important job is.

  3. Perfection!

    Simple. Elegant. Perfection.

    However my dear friend I submit you are very different from most in similar circumstances.

    I have never told you this before and this just seems like the perfect time. When I started my blog, I promised myself I would not pursue it unless I could find someone who found me only through my blog but who was a kindred spirit. I have many wonderful friends and a wonderful husband but in none of them do I see my own reflection. I needed to find that as some proof first to myself I’m not crazy for thinking the way I do but second so I could find that voice beyond my own determined to be more and better than the sum of her diagnoses.

    Thank you for being here.

    • Girlfriend, Love,
      Still teary from the sweetest comment from you, I thought. Then I read this one! You touch my heart deeply, and you humble me.

      Finding one another where we can mirror our feelings is meant to have happened. I believe that. Although I don’t know how. I don’t need to know how. Just knowing that there is a “You” here is enough. I am so grateful our paths in our own journey’s have crossed.
      You have touched me in a way no one I have ever communicated with and I am most grateful thankful, and in my loving spirit wish to wrap my arms around you in a gentle hug.
      Thank you for this. I love you Girl!

    • I don’t think I respnded to you and to this. I am going to again if I have. You touched me again when I re-read this. You know so well as I do that to find others whose agenda is so different from most are difficult to find. I support all people in any kind of pain or trauma they are in as no doubt you do as well
      But as you say there is no one who can understand you as well as your kindred soul sister as I have found in you. I miss you when I do not see a post for a while. I become concerned and find myself thinking, I should email her. But then do not because I will not puch boundaries.

      Unless you live it you don’t know, and then, even then, finding one who is looking at the battle as you do…. well??? we both know now there is one another.

      • So interesting you used “soul sister” because I have a couple of those who have come to me in the most perfect moments of life. I had not thought about it but yes, yes, yes–Soul Sister!

        I did have to giggle about your concern about boundaries that is just not me but I do know what you mean. I had similar angst calling you Toni for the first time since I could clearly see that is your name but you had never offered it.

        As for email, the one attached to this blog is for this blog, Twitter and my other IARP-themed needs. In fact I just realized today after sifting though 150 notifications that I need to create yet another one to clear up some of the clutter.

        I’m back. The first anniversary of my blog is coming and I have some big plans 🙂

        • You my dear lady may call me Toni anytime. Funny, you are the only one who has. I just realized this. And now realizing it, I also know that I like it.

          The boundaries are important in cases like ours. But once a bond has been built, which come really far and few in between when it comes to this particular basis to begin one, I think nurturing the bond is important.
          Do you know how to find my email without me having to make it so public?
          I’d not feel the slightest but of the bounds crossed by you a soul sister. You’d be most welcome anytime.
          In all the years I have communicated in ccber communities (15+yrs) I have two women friends I hold near and dear.

    • Oh Terri, it’s a two street cupcake! Thank you, thank you!. You know how our thoughts are often spun off something else we’ve read, often being another blogger?.
      Like I am from your blog I was so greatly inspired by Dr Micheal’s post. I think I have seen your comments on his blog too [yes?] so you may know who I am speaking of. He has quite an amazing theory that I am quite intrigued by, I think so much his theory would work well in my support group. If I can get everyone on board.that is. lol…..

You are most welcome to share your thoughts, comments, and/or complaints here. Know though complaints are only handled on the 2nd Tuesday of the week.~ The Management

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s