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Why I never want to be a Lymie, Spoonie or any other “ie”

Identifying with an illness puts you in danger of losing yourself to it

Words are very powerful.

Labels can be informative, educational, important and even essential at times but I have found, in my thirty years of experience as a Licensed Professional Counselor and Medical Intuitive, as well as in my personal life, that labels can also be frightening and destructive.  I try not to use them in my work with clients and I worked very hard not to label myself when I found out that I had cancer and Lyme Disease.  

Readers certainly don’t have to agree with me.  I know that the way I think is different from many traditional medicine practitioners.  To me, that is why the work I do is so successful and the reason why I am recovered when sadly, far too many people are not and likely never will be.  They have mistakenly been told that it is impossible to recover from many autoimmune diseases, including Lyme.  I have seen otherwise.  When doctors tell people that cancer is “in remission” and that they will have to spend the rest of their lives taking often harmful drugs or looking over their shoulders with PTSD, wondering when it could return, I feel very sad and even angry.  I had a rare form of cancer and will never consider myself in remission.  I don’t ever think about it except when I write articles or chapters for my book.  It isn’t coming back.  I am healed.

When I see people who call themselves “Lymies”, Lyme Warriors or who spend a great deal of time talking about various symptoms of Lyme or whatever it is they might have or who have tick symbols or even green, pink, etc ribbons on their social media profiles, I not only feel sad, I cringe.  I know that it is likely that these people have spent countless hours and often thousands of dollars trying to get better.  They are usually depressed and angry, looking desperately for any tiny tidbit of information that might help because doctors haven’t helped and neither has much of anything else they have tried.  They turn to the internet for research, which can be useful, and often find groups of people who can relate.  This can seem comforting and it can seem helpful to have a place to vent and to talk about how horrible and angry they feel because usually everyone else in their life is sick of hearing about it or hasn’t believed them from the beginning.  

I get all of this.  I also get that it can become a destructive pattern that can make people feel more afraid and more hopeless.  When you dwell on symptoms and illness, when you dwell on how bad you feel no matter what the cause, you risk amplifying the negativity and making yourself feel worse.

Affirmations are real and they are significant.  When children hear that they are stupid, useless, unloved, not worth spending time with, etc, that is what they believe.  It is common sense that his has a huge effect on not only self esteem but their behaviors toward themselves and others, physical and emotional illness, school and work performance and more.  

Labels are also affirmations.  I was very conscious not to use the words Lyme or cancer after learning that I had these.  I didn’t want the essence of the words to become part of me.  I didn’t want to let the fear associated with these words to interfere with my immune system’s ability to fight them off.  I didn’t want to put “my” in front of either of these words or in front of symptoms because that was a way of  taking ownership.  I am not a disease, why should I label myself with one or as one?

There is no way I would have worn a shirt saying “My Joints Go Out More Than I Do” or “Everything Hurts” with pill bottles on it or “My Body is Trying to Kill Me but Hey, I’ve Got Work to Do”.  These are shirts I found on a Spoonie T shirt site.  I’m not kidding.  These are actual shirts.  The messages that these words send to your body are bad enough but what messages do they send to others about the people wearing them?  Do they want people to ask about how horrible they feel?  One of their social media pages is called Spoonies for Life.  Does that mean they want to be sick for life?  Someone could answer that of course they don’t, but that isn’t what those words connote.  

For those of you who do not know what a Spoonie is, the way it has been explained to me is that it is a group of people who consider themselves to be different (they label non-Spoonies Normies) because it takes them more effort to get through a day than other people.  They are people with self identified chronic illness for the purposes of the Spoonie label, not that they don’t have actual medical diagnoses.  The analogy is that the spoons are like currency.  If a Normie and a Spoonie both started out with ten spoons at the beginning of a day and had to give up a spoon every time something was hard, like getting out of bed or brushing your teeth, the Spoonie would end up with no spoons and the Normie would have all or most at the end of the day.  It is a way of showing that chronic illness is often hidden illness and that people may be suffering but that it may not be obvious.  It started out as a way of helping people to understand chronic illness, I think.  I’m not exactly sure what it has become but I encourage my clients not to get involved for many reasons.

During my recoveries, I did take extra care to use more words like healthy, strong, intelligent and loved.   These are the labels I wanted to encourage.  I also thought about why I had these symptoms.  I believe that our intuition sends them when we aren’t listening and that they can enhance our life and make it better when we change in response.  During meditations I realized that the Lyme Disease was prompting me to face my fears of expressing my emotions and to finally write the book proposal I had been planning since I was sixteen.  It was time.  Now I have a literary agent from a large company and interest from publishers before we have even completed the final draft of the proposal.  The cancer was during a very stressful time when I was letting fear take over and I had stopped being creative or listening to my intuition.  I had cut off my relationship with God and my guides and had no faith in myself or in the future.  When I realized these things, it allowed my body to heal emotionally, spiritually and physically.

You can have an illness and still be yourself, no matter how severe the symptoms.  You can find other things to think about and focus on besides how bad you might feel or how angry you are because your life has changed.  You can still do things you enjoy, even if they might not be exactly what you want to be doing in the way you used to do them.  Most importantly, you do not have to let fear take over.  Be open to what the new circumstances in your life are telling you.  It can be easier said than done and it is difficult but worth it.  Maybe it won’t be as difficult as you think.  

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