TOUCHED BY LYME: "Chronically ill friends–I know you. I believe you. I understand you."
Heartfelt encouragement from the writer of “My Lyme Symphony.”
By Michelle Holderman
I know you.
I know how sick you are. I know how hard it is. I know the crazy roller coaster ride you’re on. I know how getting out of bed is more than you have energy for on many days. I know you push yourself to do even the simplest of things.
I know you’re investing everything you have, and even some of what you don’t, to get well, feel better and take your life back. I know you never imagined it would be like this. I know the obstacles seem insurmountable. I know people don’t understand.
I know the frustration of not being heard; of being dismissed, overlooked and misunderstood. I know the frustration and discouragement of doing everything right and still seeing little to no improvement. I know the ups and downs. I know the heartbreak and disappointment you’ve felt. I know the struggle. I know the mess.
I believe you.
I believe what you say. I believe the unbelievable things you’ve been experiencing in your body. I believe how surreal it all is. I believe how very hard you work to get well. I believe how much you try to balance everything. I believe you try to be strong for your loved ones.
I believe you’re caring, competent and capable. I believe your ability to persevere through such extreme hardship speaks volumes about who you are. I believe you inspire others. I believe you are making a difference. I believe your story matters. I believe you will overcome this.
I feel you.
I feel your inner struggle. I feel the burden you carry. I feel the aching and longing for change; for something lasting and better. I feel the deep seated determination you have to see this thing through.
I feel the utter disbelief and outrage at the ignorance and insensitivity within certain aspects of the medical community. I feel your growing desire to escape it. I feel your drive to educate them. I feel your compassion and empathy for others who are also sick, in pain and struggling with their own circumstances.
I understand you.
I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you’ve lost so much along the way. I understand not everybody can see it.
I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.
I understand the need for retreat. I understand how you want to get away but can’t. I understand the times you need to be alone. I understand your silence. I do.
I understand the need for total diversion. I understand how getting out is not necessarily about physically feeling better but about doing something just for you. I understand your desire for simple joys.
I see you.
I see your true colors. I see what you go through. I see your resiliency. I see your courage. I see the love you lavish on other people.
I see the hopes and dreams and wishes you still carry in your heart. I see the depth of wisdom and knowledge you’ve gleaned through the many long years of suffering. I see how you willingly share it.
I see how you take the time to listen to others, even when you aren’t feeling well yourself. I see that you’re going through more than anybody else really knows. I see that you’re hurting.
I see how easy it would be to give up. I see how you’ve held on. I see how you’ve stood your ground. I see the deep faith that sustains you. I see, though your body is weary, just how very strong you really are.
I hear you.
I hear your cries. I hear those held back tears you shed when no one else is around. I hear your heartfelt and gut wrenching prayers. I hear your prayers for others; how you ask God to help them hold on too.
I hear your words of support and encouragement. I hear you cheering others on. I hear how you rejoice in another’s health victory; how it’s really a victory for all of us.
Though buried beneath the exhaustion of illness at times, I still hear your passion for life. I hear the inner hope with which you speak. I hear your unique expression. I hear the truth of who you are.
And you are beautiful!
I love you, friends. You are not alone.
.
Michelle Holderman is a writer who lives in Kentucky and blogs about her own journey with chronic Lyme disease, health and nutrition related topics, as well as matters of faith. Click here for her blog, My Lyme Symphony.
Beautiful. What a gift this is. I want to share it with my son, my baby, who is going through this. So few people truly understand. Thank you.
Thank you, Lisa. Oh how my heart goes out to you and your son. Much love and hope to you and your family.
That was so beautifully expressed. Your words speak so eloquently for all of us suffering from this disease. Thank you.
Thank you so much, Nancy. Love and hope to you.
thank you
thank you
thank you
Julie, thank you. Much love and hope 🙂
Thank you! It’s so nice to read this. So many don’t understand!
Thank you, Stacy. Much love and hope.
Hi Michelle,
Thank you for posting that wonderfully crafted memo to the fellowship of beautiful, loving people who are victims of that dreaded tick bite, which delivered them to the surreal land of lyme disease. I am a loving friend to one of the many thousands affected. My friend is surreptitiously living the lyme life…struggling daily with pain, memory issues, physically manifested issues, and much, much more…hidden issues…uncertainty of the immediate future. Although I know and for the most part understand how the disease works, and I understand that my friend is a grown woman and doesn’t need to accept help from me or anyone else, I want her to know that I am here for her if she ever needs me, even if it is just to quietly be present for her in her struggle to stay afloat in this g-dforsaken word of horror and pain that she is trying so desperately to escape. I love you, my friend…Joan
Joan, thank you so much for sharing this. What a precious gift you are giving your friend; the gift of being present in whatever capacity she needs. I’m sure that means so much to her. Thank you for supporting the one closest to you who is living with Lyme. Your heart speaks volumes! Bless you. I love you too, my friend. ~Michelle
Thank you so much for leaving this love bomb in the universe for me. I really needed it.
Im so sorry that you know my pain so intimately. But its always comforting to know you arent alone.
I hope you are healthy and happy.
Alex, thank you for letting me know how this spoke to you. I’m honored. Wished none of us had to know about the depths of living with Lyme but it is a comfort knowing we aren’t alone in our suffering. And that someone cares. Love bomb – you’re the first to describe it this way. Thanks for sharing that. Much love and hope to you in this journey. ~ Michelle
I have Lyme Disease was diagnosed November of last year, believe me it has been a struggle. It’s hard to explain to others the way you feel. Sometimes I just want to lock myself away I feel so alone. Thank you for the post it made me feel good to know that someone understands. God Bless!
Carla, thank you so much for your comment. I hear you loud and clear. I’m so sorry you have Lyme. I do understand. And I know it is a lonely, difficult journey. But you are not alone. Please know there are many in the Lyme community (including Lymedisease.org) who can help with support, information or just lend a friendly cyber ear. Only someone whose experienced this can truly relate and understand what you go through.
You’re always welcome at My Lyme Symphony (http://www.mylymesymphony.com/) where I blog about Lyme and my own journey. God bless you too! I send you much love and hope.
~ Michelle
I know so many of us are struggling with some kind of disease or emotional struggle, so it’s been hard for me to share some times what Im going through.I had my husband die from cancer 13 years ago when I was struggling with MS and other problems.Since than I have been tending to my childrens broken hearts and personal issues, trying to make a new life.So Ive had to stay strong for many years for others. I found out I also have Lyme disease last year ( or been reinfected) and the mix of that with other things have just about broken me.I want you to know how much this blog you wrote and posted touched me.You DO understand by the very words you have written. .I have no medical care at the moment and have been trying to heal myself.Thanks for being a kindred soul out here on the planet, letting me know some one else really does “get it” Its a lonely disease.Gods blessings to you..
Deb, I am so sorry for all you’ve been through. And having Lyme on top of your other losses and struggles makes it all so overwhelming. My heart goes out to you, friend. Yes, this is a very lonely road to travel but please remember you’re not alone. I and many others do genuinely understand the hardships of this disease. And the brokenness. I’m really glad to know those words spoke to you in some way. I don’t take that lightly. Thank you for taking the time to let me know. God bless and keep you. Much love and hope to you always.
~ Michelle
Thank you so much for writing and sharing this. It’s exactly what I needed tonight. 🙂
Brenda, thank you. It always means something to know these words speak to someone’s heart. I appreciate you taking the time to let me know this. I wish you much love and hope in your Lyme journey.
~ Michelle
Wonderfully written. I’ve learned so much from my friends suffering with this and other chronic illnesses. I have passed on the link so they may also be up-built by your words.
Teri, thank you so much. And thank you for sharing this link with your friends. I hope it helps them not feel so alone. Appreciate you taking the time to do that and leave a comment. Hope this finds you well. Love and blessings to you. 🙂
~Michelle
This is exactly what every lyme patient wants to hear. It amazes me how so many different people can feel exactly the same. That’s probably why we lyme patients get so close…we understand one another so well.
Holly, you are so right. There is a special camaraderie in the Lyme community. Even though we’ve all been thrust into this life-changing disease, we find ourselves among supportive friends. And that sure makes a difference. Thank you for taking the time to leave a comment. Appreciate it. I wish you much hope and love in your own Lyme journey. ~ Michelle
I’ve been sobbing like a baby reading this – I truly cannot have found this at a better time. I appreciate you so very much for posting this, and thank you for the bottom of my heart for ‘seeing me’.
Heather, I don’t take your heartfelt words lightly. They brought tears to my eyes. I’m honored to know this spoke to you right now. And I’m so very glad you felt genuinely seen. I understand. That’s one of the reasons I wrote this. So thank you for sharing a piece of your heart here. Please consider yourself hugged. And don’t ever forget that your story matters. YOU matter. Much love and hope to you friend. ~ Michelle
Thank you.
Kristi, thank you for taking the time to leave a comment. I really appreciate it. And I wish you much love and hope in your journey. Always.
~ Michelle
This is beautiful Michelle. It totally touched my heart and soul. I suffer from 19 different diseases and illnesses, the majority of all of them causing chronic intractable pain and many other horrid symptoms. Your beautiful story you’ve written could be said about any illness or disease someone is suffering with. I have been tested for Lyme, but only one test was used, the ELISA. They did not do the Western Blot. And yes, I have been bitten by the tick that causes Lyme twice before. The test always comes back negative. I’m still trying to deal with the utter cruelness of a message sent to me by a woman I’ve know for 43 years who is supposed to be my best friend. We have a mutual friend, he’s more of an acquaintance to me who is terminal with cancer. I have known for about 4 years now, that my so-called best friend does not believe in me anymore. She told me this and I won’t say the other person’s name. “So-and-so is terminal and rarely talks about his “condition.” It makes it easier to be in tune with it, makes it easier to be compassionate. When you hear/see the same thing over and over for years, it takes its toll. And no, I’m not downplaying the seriousness of your illnesses, they are real and are bad. I just cannot do anything about them – nothing. (I never asked her to). Then she went on to tell me: I don’t know what to do after that. I’m at a loss, so I just don’t talk about it. You are just so consumed w/your health and have been for many years now, that it’s changed you. I get it’s serious, it’s very serious, but you are just so consumed w/it. My boundaries are pretty tight (what does THAT have to do with anything?? What…I’m crossing HER boundaries because I was and always have thought that the people who love us the most, actually care and WANT to know what we are dealing with and going through? And no, I do NOT always dwell on it! I also talk about life in general, what I’ve done that day, my kids, my grandbabies, you name it), so I do have issues when people cross them. (I guess she is referring about me discussing my diseases and illnesses with her). Then she goes on to say: I don’t like to put my “DRAMA” out here (meaning talking about it on Facebook, which I rarely say a word about my “issues” on my Timeline, I keep them in the two support groups I run and the ones I’m a member of. Then she went on to say to me: I think you have a death wish. I don’t think anything anyone can say or do wil affect you in anyway. No one can do anything about this, we are not all doctors. (EXACTLY AND I DO NOT EXPECT ANYONE TO “FIX” IT, IS IT SO DIFFICULT FOR YOU TO LISTEN THOUGH? AND PLEASE UNDERSTAND, I DO NOT DWELL CONSTANTLY ON MY DISEASES AND ILLNESSES. I DO HAVE A LIFE). Then she went on to say to me: You know why the doctors WON’T help you? Because you have to tell them your entire life story (WELL DUUH! EACH NEW DOCTOR YOU GO TO AND THE ONES YOU HAVE BEEN SEEING ASK ME TO TELL THEM WHAT IS GOING ON AND WHEN SEEING ANY NEW DOCTORS THEY WANT TO KNOW, FROM THE BEGINNING, THE WHOLE STORY IN ORDER TO BETTER HELP ME AND DIAGNOSE ANYTHING!!! They ALL ask me to bring in any reports, x-rays, ct scans, you name it). Then she tells me that when I see them I hand them mounds of paperwork and that I act like I am the doctor!…WTF????). Then tells me: They don’t want to deal with all of that, you are a liability to them because you scare the shit out of them!. Can you believe someone could say these things to someone so ill?? Especially their best friend who is supposed to be there for them for the long haul. Every single doctor I’ve ever seen has ASKED me to bring in all of my records, films, anything and everything I have. They ALL also NEED AND WANT to hear EVERYTHING I have to say about what I’m going through. How can someone be so utterly ignorant to NOT realize ALL doctors want and need this information!!! And trust me, I’ve seen too many to count and a patient is always asked these questions and it does NOT scare them! If a doctor DOESN’T ask these questions there is something wrong with THEM, not ME! How can they begin to treat you if they don’t know everything going on with a person??? No-brainer there! After this was said to me, I was left in total shock. I just told her I had to go get some things done. She didn’t bother to check on me, call me, text or anything for weeks after that! She only calls me ONCE a year. Her treating me like this and saying these things to me has crushed me. I know she bashes me behind my back to other mutual friends and thank GOD, a lot of them ARE truly my friends and make a point to come back to me and tell me that cannot believe she could say such things to me. She is going through some really tough times right now with one of her GROWN children, her husband and their 2 kids, her grandbabies and messages me through the chat on Facebook and vents to me about it all. It is horrible what she is going through. Thing is, I LISTEN, I CARE. And I tell her that. I VALIDATE her feelings. I would never even THINK of saying the things she has said to me, to her. It’s called EMPATHY, LOVE, CARING. Michelle, what you have written here is beautiful. You are and will be in my heart, thoughts and prayers. Teresa.
Teresa, thank you for sharing your heart. I’m sorry you’ve suffered so much with chronic illnesses. We can all relate to some degree with one another. I hear and can appreciate your struggles too, including personal relationships. I know it might not change anything but it can sometimes help to write out how you’re feeling. I’m really glad to know this spoke to you in some way. That touches my heart. Sending hugs your way and praying better days for you. With love and hope. ~ Michelle
Thank you for this, thank you. I forget there are others out there who also struggle. It is not something most people understand, so thank you, thank you from the bottom of my heart <3
Elena, thank you so much! I don’t take your words lightly. It can be really hard to think about much else when you’re sick and fatigued and are just tying to get through each day. I’m so glad to know this spoke to your struggle. Sometimes, it just helps knowing there are others who really do understand. And care. Wishing you better and brighter days. Sending much love and hope your way. ~ Michelle
Thank you for this! I just switched insurance and got a new doctor I’ve been suffering for 3 years and was referred to an infectious disease specialist last week and just found out he refuses to treat me, I really needed this, thank you
Kayla, I’m so sorry to hear this. Unfortunately, many have had similar experiences. It’s frustrating, I know. Appreciate you taking the time to comment. I always value the heartfelt words people share with me, especially fellow Lyme warriors. It’s touching to know my words spoke to you in some small way. And that’s exactly what I want – to help validate and encourage others in their Lyme journeys. I pray you find a doctor who can help give you the treatment you need. Don’t give up. You’re worth it! Sending much love and hope to you. ~ Michelle
Thank you so much for writing this. I have no words for how this touched me today, just thank you.
Connie, THANK YOU. Your words mean more than you know. Sending much love your way. ~ Michelle
I was really surprised that no one on this site seems to know about Dr. Cowden’s work to heal Lyme’s sufferers. You may want to spread the word; http://www.nutramedix.ec. There is a great deal more research going on in Europe and South America than here. I have been on the Cowden Protocol for almost a year and am managing my Lyme’s without the use of antibiotics.