JOURNEY TO SELF-DISCOVERY
When I Stopped Tailoring My Answers to 'How Are You Feeling?' to My Audience'
After more than a decade of being sick, I still get asked within my circle of friends or by extended family members why I am not cured yet. Or why don’t I look sick like other Lyme patients they have seen in the news? Some insist on recommending me a either specialist or a homemade remedy meant to bring me some relief, while others dive into pure oblivion and tell me Lyme disease is not real.
A few years back, I used to get annoyed by these comments. I was disturbed by the fact they were not able to see what I was going through. I blamed them for not taking a step further and digging deeper in what my Lyme world looked like. I felt the gap between us grew bigger and bigger day by day. I couldn’t relate to anything they were interested in, while they failed to understand that I had hit rock bottom, that my priorities had changed and my life had turned into a Lyme wonderland.
Now I know that I was equally responsible for this gap, as I chose to isolate myself and keep my story and suffering private for various reasons. As a result, I lost a lot of people on the way and I am partially guilty for not doing any follow-up. I was too tired dealing with the havoc caused by my illness to think of others. Or maybe Lyme made me less tolerant to nonsense. I don’t take it anymore. I am too busy digesting my Lyme cocktail to worry about what people think or want to hear.
During any social gathering that I attended, when asked “How are you? How are you feeling?” I always replied, “It depends on how much time you have.” At that point I was able to see the confusion on their faces.Then I would continue with my explanation.
For those who were pressed or simply asked me a polite question my answer was, “I am fine! Thanks for asking!” To those who had a minute or two, I used to say that “there was room for doing better” and talk only about my dietary restrictions.
Only to those few who had five minutes to listen to me, I was giving a brief summary of my daily cocktail, explaining how the burning under skin felt like, giving a preview of a day with my shifting pain, tremors, twitches, floaters, fatigue and concluding with the level of pain from a scale of one to 10.
In the rare occasion I was given more than five minutes, I would dare to talk about my anxiety or how lonely or depressed I felt. In most of the cases I would stick with “I am fine!” just to avoid boring my audience or having another polite conversation.
I learned to tailor my answers according to the time I was offered. Let’s be realistic, who wants to listen to a sick person venting about his day? One day I was not able to stick to my tailored answers and I simply blew off some steam. I could not pretend I was not affected by others’ comments or reactions regarding my chronic illness anymore.
Thus I decided to Lyme-educate everyone around me in order to raise awarenesses. I started to open up more about my symptoms, the anxiety and depression I was dealing with. For the first time in years, I was revealing a more detailed picture of how a regular day looked like for me. Their reactions varied and revealed a wide array of feelings: empathy, surprise, shock or boredom.
That was a valuable lesson which taught me when no one played on my side, I had to put myself first. Therefore I changed. Lyme changed me. It bent me but didn’t break me down. I turned into a survivor and I don’t exaggerate when I say that. I got stronger!
Think only of the level of pain I am constantly dealing with! On top of that, add the burning sensation that never leaves me and the chronic fatigue.
I doubt one would be able to cope with it and still be able of doing other things. I turned into a Lymie. I did not know there was a name for it. A Lymie warrior and writer, as I found comfort in writing. When there was no one around showing any interest in what I had to say, I wrote it down. That spilled ink helped me get it out of my system. I dealt with feelings I had no idea how to label or understand: anger, guilt, rebellion, despair, etc.
Soon the writing took a different direction, as I realized that my voice was being heard. I understood that it was within my power to make a change, to help others see what it meant to live with an invisible illness. I was pleasantly surprised to see that my words brought comfort and helped others who were still struggling to come to terms with their illness. The isolating loneliness of a chronic illness takes a toll on you, more than you could imagine. Talking about it can only shorten the gap between the two sides.
What helped you move forward and empower yourself? What determined you to raise awareness? I’d love to hear your story!
This post was originally published on my a-zlyme.com website and later on it was featured on THE MIGHTY.
Image source: Lavi Picu
#teamgirlpowa #thealliance #teamcanada
Thank you for reading, I hope you enjoyed it! Feel free to resteemit or upvote it!
Please leave your feedback in the comments, I would love to hear your thoughts!
@2018 LaviPicu aka The Lyme Poet. All rights reserved.
Hi @lymepoet! You have received 0.1 SBD tip + 0.02 SBD @tipU
from @tattoodjay :)
Check out new tipuvote! feature :)
Thanks for being able to be strong and open and to share this with us
I do not have first hand experience with Lyme Lupus or any of the invisible illnesses as one friend of ours calls them but through good long talks with our friend and through reading your posts I do and I admit only in a small way have a grasp on the magnitude of these illnesses.
I think it is important no essential that when suffering with such illnesses you are able to have people around you that you can express your true feelings and struggles with people who generally care and listen
🤗 your a powerful and inspiring person and never forget that
Tip!
Thanks @tattoodjay! Yes, having a supportive family makes a big difference!
You’re welcome 😉
Hey!! Great post!! I was diagnosed with Chronic Fatigue/Fibromyalgia in 1989, when no one knew anything about any of it. Luckily, I had a great naturopathic doctor that put me on a good path. I was gluten free way before it was cool. But, everyone else at that time told me it was all in my head. The worst thing you could ever hear! Now, 30 years later, I had a doctor tell me that I was probably misdiagnosed and I most likely had lymes. So, did some testing, and sure enough! I have undergone every natural treatment you can imagine, and still keep to a strict diet. For the most part, I feel great! Though, I once in awhile have my days. I just stay super positive and don't let in any of the negative. :). Thanks so much for bringing more awareness to this! There is so much that is still unknown!
Amy
Thank you for sharing your story! You are right, being positive is the best approach one can take in such a case. You did get a positive test result for Lyme? I imagine that by now you know that Elisa and Western blot tests are not reliable to diagnose Lyme. Not too mention that they test for only a few strains while there are over 300 strains of Borrelia worldwild! Be well!
Always Room For Healing 💕 Thank You for sharing your story to #womenspeakout !
Thank you. Yes, there is always room for healing. Though sometimes it takes a while to understand that we don't need to fight all battles.
I am your post poster.teruslah work..because degan berkarya.kita can help others.semoga successful friends@muhamadin
Quite a moving and emotional tale of your life, I had to read it through twice because I did not want my comment to appear fickle or fake. I know little of your affliction, but can in some way relate to your struggles. My Mother was diagnosed with Multiple Sclerosis some twenty years ago, I do not know if it is similar to your affliction but I do know from your description some of the effects were very similar. It was a long hard struggle for her, myself and my Dad until she passed away some 14 months ago. It's important to do as you have raise awareness of these struggles difficult illness can cause - from your previous posts I would not know - depression affected my Mum alot and I know sometimes just a few kind words or act could lift those dark clouds. Support is something we all need at some time, I respect you for sharing this and will always be there on discord for you.
#thealliance
I am sorry to hear about your loss. I am thankful to have found a new supportive friend. Thank you!
A recent study that I read recently said that MS is an underlying condition of Lyme. ;0(
Thank you for sharing your story of growth in self-love! In finding the locus of power within me to affect how my time alive would be spent, I found my happiness. The product of a religious childhood that taught the fallacy of predestination, I found myself excusing errors in actions and judgement of myself and others because "it was part of the plan". I was creating my own hardships that led to anxiety and depression; I can't imagine the amount of frustration when these conditions occur over a chance infection of a disease.
As a healthcare provider, I feel that the mental toll of managing chronic diseases is often overlooked and as a clinician that specializes in neuroscience, the impact of mental illness like anxiety and depression on daily functioning, and therefore quality of life and prognosis, is enormous. I do my best to help connect communities of patients to a support communities and with technology, this has become much easier and I feel the severity of isolation reported has decreased because of it. Thank you on behalf of all of the people that you have helped and will help with your writing!
Thank you for your touchy words and thoughts. I am humbled.
Oh wow, you are going through so much and I can totally relate to your reactions to how people asked you different questions. This often happens when we aren't at peace with ourselves and have troubling things going on in our head. I had the same frustrations when I was going through a bad financial crisis and used to flip each time someone ask me 'How are you?'
I flip is when I see or hear people addressing rhetorical questions. I rather have them ignore me than pretend or being polite.
@originalworks
I was checking out thealliance discord channel this morning and was reading a post that @cOff33a put online yesterday. Amazing what other stories were hidden in his own post. It could take all morning to view all the links. All very interesting.
You are indeed a Warrior woman. I have often wondered how individuals put up with so much pain on a daily basis. I am sure it is life changing. You have a very special gift, you were able to find the strength and courage within yourself. My prayer for you is for continued strength, courage and peace. I am re steeming this article.
@warpedweaver Thank you for your kind words. All of us struggle in one way or another. Looking on the bright side and being positive is the only way to keep on going.
Onward through the fog, sister :)