In honor of this month’s theme Chronic Conditions and Relationships – our February HABC is: Write a Letter to Your Condition. Sounds a little strange? It is, because you’re penning these words not to a real person, but to your disease, personified. Inspired by the old-fashion correspondence of snail mail (or, I suppose, you could be inspired by the art of email), write a letter, a note, a memo addressed to your health.
This is your chance to tell your health what you really think of it, how you really feel … and no holds are barred in this exercise.
Whether you’re writing a letter of love (which may be a challenge) or a note that describes what you’re working on in your communities to help raise awareness for your health condition – the point is to be honest and to examine your emotional ties to your physical health. This could be a great way to check-in with how you’re feeling and work on that first relationship conflict we mentioned in our theme announcement: Your Condition vs. Yourself. And, if you want to complete the correspondence – it would be really interesting to reply to yourself from the perspective of your health. What does your health think about your letter? Bonus points if you write two letters this month!
(If you need an example check out the awesome community Dear Thyroid, built around the idea of writing letters to your thyroid.)
Once you’ve written your letter, we hope you’ll share it with our community by leaving a link in this discussion in the Health Bloggers Group. We also hope you’ll post this brand new graphic in your post to show that you’re a participant in the HABC! (Because who doesn’t like a Ferris Wheel o’ Health Activism?)
If you’re up for the challenge, you can just start by typing out the words, “Dear Health,” and flex your creative muscle!
Dear MS,
You and I have been together for more than two decades. I know you remember I had just turned 20 when we first met. I was a college student and just a kid for all intent and purposes. It was such a scary time- I didn’t know who you were and I felt so vulnerable. Of course 20+ years later… you are still scary because I never know what you are going to do next.
The thing is, I’ve never been an adult without your initials tattooed on my brain. I never found out what my life choices would have been. My career path, my social life; even my choice of fun activities- were all shaped by your presence.
And in some ways that might have been good, because I didn’t have to give up long held passions. (the optimist in me) But you freaked me out. You had such a long list of terrible things you’ve done in previous relationships. How will you treat me? I often thought, “I’ll never be able to deal with that!” But the thing is MS, you have done some pretty awful things to me, and I’ve coped with far more than I thought I could.
And you know what? My successes (ie. finding a husband who didn’t care about MS, having an awesome baby girl and earning a Master’s Degree) are even sweeter, knowing that I did it in spite of you. On top of all that, I write a blog that is very well received (I didn’t even know I could write!) and founded a non-profit dedicated to help others like me learn about our own version of MS, the way they want to. (mssoftserve.org)
Many people say “I have MS, but it doesn’t have me”. For me, I AM MS. I don’t know who I am without you. And when it comes down to it…I like the resilient, inspired, optimistic me that I’ve become while dealing with you. (And with a life mission, no less!)
So while many times I hate you and pray there will be a time when you leave forever, I also know that I can handle whatever you throw my way. And I believe I have a very meaningful life because of you.
Granted, I’m having an optimistic moment right now. If this had been on a different day, I might be furious and curse every part of you. I’m sure you understand!)
Sincerely (and good riddance!)
~Amy
MS,
This exercise of writing to you I am doing out of curiosity and a message on Facebook. The use of a salutation cannot be allowed for example dear cannot be allowed. You are a “Pre Existing” condition here on the State of Florida, which makes you a no one and your take everything you can find from the patients that get you. There is no recognition of MS at the Republican Party so patients are taken away their right to services that can help them to have a better life. Poor MS Patients that are Republicans. Because according too many accounts many patients are suffering.
We have been together for more than a decade. Thanks to the abuse of two individuals and one of them uses to work as a translator for a hospital I learned about you. I almost lost my child, but it is not illegal to contract MS at least for now. God knows what will happen in the future with politics since they change everything. Parties use their power to attack simple facts as been from Mexico. At the Commonwealth of Puerto Rico officials from the government can refuse the services to people with disabilities because people do not know their rights but I do so and I took them to court and I won my case but the profits stay with lawyers because the same abuse keeps happening today to other citizens. God only knows what will happen in the future. I only have God because a Health Care does not exist at the State of Florida for MS Patients.
I know you remember that when I was diagnosed I lost my husband, my father a year later and then you. You really made a mess of my life, and you did not have any compassion for my child. People really do senseless things for power or attention. What would be your case? These individuals did not think on her wellbeing of my child, but not even the State did care either. I had my child seven year prior to you. So many emotions happened, but there is no accountability and with you is always scary because doctors do not have a clue and asking them can really mess up things. The Economical Crisis has left the MS Patients stranded for no resources at the United States. Your super ego does not give peace. You are always there to conquer in the worst way. I cannot give you the acknowledgement of a person because the Republican Party does not acknowledge you. Thank God, I am Democrat.
You must be happy to be in control always, but the super ego can have so much. In my opinion, the system has let you take control of people’s life. To them you are not significant because we do not count. We can only rely on estimates. More than 250,000 patients on the United States and the world I do not know.
My carrier change because of you. Social life does not happen because society does not know anything about you and thanks to that lack of knowledge abuse can happen. I am always in guard like the day the police officer at the Downtown Library freak out for someone confusing the cool packs on my cool vest for a bullet vest. Yes, you have a long list of terrible things you have done. I am not waiting to find out how you will treat me. MS you have done ugly things to me, but I have coped alone.
My successes doing it alone. I have helped others. I stop comparing you cannot please everybody.
Like the day my husband died that I had a chance to tell him I will be Ok.
I can only stay optimistic for my child. I do not have anything else.
Out of curiosity. When will you go away?
EM,
Este ejercicio de escribirte lo hago de curiosidad y un mensaje en Facebook. La utilización de saludos no puede ser permitido como ejemplo querido no puede ser permitido. Tu eres una Condición “Pre-Existente” aquí en el estado de la Florida, lo cual te hace un nadie y tomas lo que te dé la gana de los pacientes que sufren de ello. No hay reconocimiento de la EM en el partido republicano así los pacientes son removidos de derechos que pueden ayudar a la existencia de una mejor vida. Pobres Pacientes con EM que son republicanos porque de acuerdo a tantos relatos muchos pacientes sufren.
Hemos estado juntos por más de una década. Gracias al abuso de dos individuos y uno de ellos era un traductor del hospital que aprendí de ti. Yo casi pierdo a mi hija, pero no es ilegal tener EM por lo menos por ahora. Dios sabe que pasara en el futuro. Con la política siempre cambian todo. Los partidos usan su poder para atacar cosas simples como ser de Méjico. En la Commonwealth de Puerto Rico los oficiales del gobierno pueden rehusar un servicio a personas con discapacidades porque la gente no sabe cuáles son sus derechos, pero yo los sé y los lleve a la corte y gane el caso, pero las ganancias se quedan en los abogados porque la misma situación sigue hoy a otros ciudadanos. Dios solo sabe que sucederá en el futuro. Yo solo tengo a Dios porque el Cuidado de Salud no existe en el estado de la Florida para Pacientes con Esclerosis Múltiple (EM).
Yo se que recuerdas que cuando fui diagnosticada yo perdí a mi esposo, mi padre un año después y entonces llegaste tu. Tú realmente complicaste mi vida, y no tuviste compasión para mi hija. La gente hace cosas inapropiadas por poder ó atención. ¿Cual ser tu caso? Estos individuos no pensaron en el bienestar de la niña, pero aun ni el estado le importo. Yo tuve a mi niña 7 años antes de ti. Tantas emociones pasaron, pero no existe el concepto de fiscalización y contigo todo es de miedo porque ni los médicos no tienen una idea y preguntarles realmente complica todo. La crisis económica ha dejado a los Pacientes con Esclerosis Múltiple varados con ningunos recursos en los Estados Unidos. Tu súper ego no te da paz. Siempre estas allí para conquistar de la peor manera. No te puedo dar el reconocimiento de una persona porque el Partido Republicano no te reconoce. Gracias a Dios que soy Demócrata.
Debes de ser feliz por estar en control todo el tiempo, pero el súper ego puede obtener tanto. En mi opinión el sistema te ha permitido controlar la vida de la gente. Pare ellos no eres significante porque no hay ni una cuenta. Solo podemos contar con estimados más de 250,000 pacientes en los Estados Unidos y el mundo no lo sé.
Mi trabajo cambio por ti. La vida social no sucede porque la sociedad no te conoce nada de ti y gracias a esa falta de conocimiento el abuso sucede. Yo estoy siempre en guardia como el día que la policía en la Biblioteca de “Downtown” se atemorizo porque alguien pensó que los paquetes de enfriamiento en el chaleco de enfriamiento de chaleco era un chaleco contra balas. Sí, tienes una lista interminable de cosas terribles que me has hecho. Yo no espero para encontrar ¿Como me vas a tratar? EM me has hecho cosas horribles, pero he sobrevivido sola.
Mi logro hacerlo sola. He ayudado a otros y deje de comparar porque no puede complacer a todos.
Como el día que mi esposo murió que tuve la oportunidad de decírselo que estaré bien.
Solo puedo ser optimista para mi hija. No tengo nada más.
De curiosidad. ¿Cuándo te vas?
One of the great blog post subject suggestions made this month by the WEGO site was this: To write an imaginary letter to your disease, or to imagine a conversation with your disease. Here’s my slightly twisted version:
The talk show director clapped his hands for attention.
“Alright, everyone. Choose a seat! Settle down, please! Thanks for being here for another episode of Meet Your Diagnosis! brought to you today by the Never-Empty-Water-Bottle company, and the QWIKEE Bathroom Locator app now available for all smart phones. I’d just like to clarify the audience rules, so listen up.
As you know, our host Julia can be um….a bit temperamental. You may recall the disastrous results last week when one of our audience members brought in a box of TastyKakes, so if anyone has any kind of baked goods – this includes brownies and cookies, people – please keep them completely out of sight and DO NOT CRACKLE THE PLASTIC WRAPPERS. If you choose to ignore this request and draw her attention it is in your best interests to simply surrender the pastry. The producers of Meet Your Diagnosis will not accept any responsibility for injuries incurred if these instructions are ignored and our host vaults over any audience members in pursuit of your dessert item.
OK. Let’s see…what else….oh, yes. Please observe the APPLAUSE sign when lit, and let’s have quiet now as we go live in three….two…..one…..” the director silently pointed to the brightly lit talk-show set.
The plush curtains parted to reveal a smiling Julia. “Welcome everyone to this week’s edition of MEET YOUR DIAGNOSIS!”
The audience dutifully cheered and whistled. Julia squinted as she hopefully scanned the audience members, then appeared slightly disappointed as she took her seat behind her desk on the colorfully decorated set. She took a sip from the water bottle placed prominently in front of her.
“Well, now. Our last episode was quite exciting, wasn’t it?” she commented brightly. “I’d just like to update everyone that last week’s audience member suffered only minor injuries – two broken legs, a concussion, and a dislocated shoulder – and is expected to make a full recovery!”
The audience clapped wildly, as prompted.
“The TastyKakes, while slightly squished, were still quite delicious!” Julia smacked her lips as she took another quick examination of the audience, who suddenly became very quiet. The front row members shrank back slightly in their seats and exchanged nervous glances.
Julia sighed and shuffled the papers on her desk. “Today’s episode should be quite interesting. Let’s all give our guest diagnosis Sjogren’s Syndrome a welcome round of applause, shall we?” She stood up and courteously smiled as Sjogren’s syndrome made it’s way onto the stage, waved at the audience, and settled into the cushy guest chair.
“Comfy?” Julia asked sweetly.
“Very!” It answered confidently.
“Well, I’m glad that you are comfortable. BECAUSE YOU HAVE MADE MY LIFE A LIVING HELL!” she snarled.
The audience collectively gasped with surprise, then began hooting and applauding their approval. The floor director rolled his eyes and sighed. “Here we go again..” he whispered to the nearest clipboard-carrying assistant. “Better call catering and make sure that we have her dressing room stocked with mango margaritas. Mango. Got it?” The assistant nodded, then mumbled quietly into his walkie talkie as he scurried away.
Sjogren’s syndrome sat stiffly up in it’s chair. “Well, now. I wasn’t prepared for a bout of attack journalism!” it sniffed in indignation.
“Really? I wasn’t expecting to have my body attacked by autoimmune disease, either!” Julia snapped.
They glared at each other across the desk.
“If you’re going to conduct yourself in such a undignified manner, I may as well leave!” said Sjogren’s syndrome, as it began to rise from the chair.
Julia smiled smugly. “That would be wonderful.”
“Wait a minute!” it exclaimed. “You can’t get rid of me that easily!” It sat back down in the chair with a decisive thud.
Julia sighed. “Drat. I really was hoping that would work. Well, if you insist on hanging around, you are going to have to explain a few things.”
“Why?”
“Because I don’t know why you chose to bother me, I don’t understand what you’re doing to my body, and I want you to leave me alone,” she said. “What do you say to THAT, buster?”
“Ah.” Sjogren’s syndrome settled deeper into the chair. “Those are excellent questions but I simply have no intention of answering any of them.”
Julia’s jaw dropped, speechless at it’s audacity.
“Why should I? Your best scientists and researchers can’t say why I made my appearance. Oh, sure, they talk about genetics and infections and exposure to various compounds, but to be honest, they don’t have a clue. My dear woman, isn’t it abundantly obvious what has happened to your body? The dryness, the fatigue, the joint and lung and skin issues?” It coughed delicately. “Perhaps you don’t understand because of brain fog. A delightful manifestation, if I do say so myself.”
Julia crossed her arms in front of her in a decidedly confrontational pose. She leaned forward and narrowed her eyes. “Oh, really.”
“Yes, really. AND, your best scientists and researchers don’t have a clue how to treat me, either. They throw drugs at me, and I really don’t want to brag here,” it smirked, “but pffffft. So what if they slow me down a bit? Or make some of the symptoms less severe?”
It held up it’s hands as if to block Julia’s next comment. “Yes, yes. You’re going to say something about prednisone and DMARDs and biologics. Bah. Those puny pharmaceuticals can’t stop my progression. Actually, I find it tremendously amusing when I see all the side effects that these drugs have.” It chuckled.
It leaned back and smiled expansively. “Ah. I think that my favorite by far is the carbohydrate cravings that accompany prednisone. Familiar with that one, by any chance?”
Julia scowled. “No. Not in the least.”
It suddenly reached under it’s seat and coyly held up a white take-out box plastered with Rose’s Deli stickers.
“Ooooooooooooo,” the audience murmured apprehensively. Several members seated in the back row began to furtively move toward the exit.
“I couldn’t care less,” Julia said between gritted teeth.
“I’m so glad to hear that, darling. Because I adore Rose’s Deli carrot cake, how about you? Oh, right-o. You don’t have problems with carbohydrate cravings, do you? Mmmmm…..just look at all that lovely cream cheese frosting….and I think that little orange frosting carrot is so charming…” It waved the now-open box enticingly under Julia’s nose. “I can’t get enough of the aroma of cinnamon and nutmeg and…..GAAA!”
“Quick – cut to commercial!” shouted the floor manager into his headset.
“Wow. I didn’t know the old girl was so agile!” commented the sound tech as Julia made a sudden wild leap over her desk. “Think she’s been getting a little exercise lately?”
“Nah,” replied the lighting supervisor. “I think she actually got a bit more air when she body-slammed last week’s guest. Hey – better cue up at least three more commercials. It’s a real zoo down there.”
“Hahahaha! You can squash me but you can’t ever be rid of me!” chortled Sjogren’s syndrome from under the plush guest chair as the audience thundered toward the exits.
“I’ll get you someday, I will!” shrieked Julia as she crouched on all fours, trying unsuccessfully to drag her tormentor out from his hiding place.
“Um. Julia…” the floor manager timidly spoke into his headset. “Girl….you may want to change your…er….pose. Not your most flattering profile…”
“Wha-?! Ah, geez.” Julia shook her head and sat back in disgust. “I am SO done for the day!” She stood up, smoothed her hair and skirt, and attempted to compose herself as she stalked toward her dressing room. After a few steps, she whirled around to snatch the Rose’s box as muffled guffaws could be heard from under the cushy chair.
She shook her fork in the direction of the snickering Sjogren’s syndrome. “You think you’ve won? Dream on, you monster. You can hide, but I’ll get you somehow. Somewhere. Sometime. Our people have not even begun this fight!” and marched off the set.
“Margaritas, people. Mango margaritas. NOW.”
The staff sighed as they surveyed the trashed set. “Where did Sjogren’s syndrome go?” one of them asked another as they began to sort through the rubble.
“It’s lurking around somewhere, the creep,” the floor director commented with resignation. He rubbed his chin reflectively. “But it won’t be here forever. I’d put my money on Julia and the Sjogren’s Syndrome Foundation in this fight. Sjogren’s days are numbered. Definitely.”
Dear simple partial seizures,
I don’t know if I can find the words to describe what you have done to me these past 10 years, but I sure am going to try. The challenge is to do so and leave out the expletives.
I was a strong, healthy woman in my young 30’s. I was a happy single mom, finally living the life I had always wanted to live. I was teaching my own class, my girls and I had our own place in Florida, a man who seemed promising; things were going great. Until they weren’t.
When you started coming, I buried the woman I once was. Gone forever was the strength, the beauty, the confidence, the hope. My body began betraying me and worse than that, so did my family and friends.
You made me do the most embarrasing and humiliating things. You twisted my face and limbs into ridiculous poses over and over again. You made me convulse. You made me suddenly drop to the ground. You made me pant and gasp. You made me cry and say strange things. You made me walk funny. And you made me do this all while I was conscious, so I felt it, heard other people’s comments, heard doctors and other people say I was faking it, or crazy, or high.
You dragged me from doctor to doctor. First, I’m told I’m having a nervous breakdown. Then, an inner ear infection. Then, dystonia. Then, I’m told I’m crazy. So many times along the way, neurologists threw their hands up and said they just didn’t know. Other times, they simply said I had a movement disorder, and left it at that. So often I found myself knowing more about my symptoms and treatments than my doctors. Yet you still found a way to beat me down.
You really have been enjoying yourself all these years, haven’t you? You’re just toying with the medications doctors throw at you because, they only seem to keep you at bay for short periods of time before you blindside me with breakthroughs, and progressing seizures, all along eluding doctors of your real name, and alienting my family, scaring off my friends, robbing me of my ability to work.
And now that we know who you are, so what? I can’t get back what I’ve lost. It’s all gone. Thanks to you, you jerk.
So now, here we are, seizures. I spend so much of my days with you. There is no activity that goes on that goes on without you in mind. If it is too stressful for me (aka you will be coming along), I either don’t go, or I have to sit in a wheelchair, or I have to cut it short. Thanks a lot, Bud.
I miss a lot of time with my kids and my partner thanks to you. You come along and they still have to do what they have to do. I feel like a piece of furniture, a vibrating couch or something. And not in a good way. Who wants to be a piece of furniture in their own home?
I’ve got to tell you, seizures, you’ve stolen a lot from me; my youth, my energy, my credibility, my freedom, my social life, my usefulness, my self-esteem, and at times, my hope and my reason for living. You’ve been a selfish pig and I wish you’d just disappear.
If I haven’t made it clear enough, take a hike. Go die somewhere. You’ve made enough of a mess of my life and I don’t wish you on anyone else’s.
Karin
Dearest Karin,
Why do you speak of me this way? You know I love you. Haven’t we had such good times together?
Don’t you remember all the wonderful falls we’ve taken together? The bruises, the lumps, they were wonderful. Wish we could have broken a bone. Ah, maybe someday…
And the way I’ve made you come to appreciate the darkness. Sure, you liked lights before, but I’ve shown you the way, the way they hurt, the way they will make you fall. So you can’t go to concerts any more, or see lazer light shows, or look at passing police cars, or any bright lights, for that matter. You didn’t really need that stuff. Besides, darkness becomes you.
And quit crying about all the things you lost; your friends, your family, your job. You have a whole new life now. With me. I’ve got you all to myself. Don’t worry, I’ve got you covered.
You say you’ve got no friends? I’ll be your friend. After all, people have been disappearing since I came along, people you thought would be your buds for life. But who’s been sticking by you this whole time? That’s right, your good buddy, seizures. Oh, yeah, sorry about the whole diagnosis thing. I thought it would be funny. No, huh?
Look, you and I are going to be together a long time. Probably the rest of your life. So you’re going to have to get used to the fact that I control you. At least for now. You just keep fighting back like you’ve been doing and maybe you’ll be the one in control.
Hugs and kisses,
Seizures
This letter can also be found on my blog, http://www.navigatingillness.com/2011/02/to-whom-it-may-no-dear-chronic-illness.html
Dear Autonomic Nervous System Damage,
You and I have known each other for what, over 10 years now? It’s been a long ride, it’s been a long roller coaster ride that is. Especially the last few years. When I sat down to write this I figured “Oh yeah, my chance to finally unload on this ______ ___ ___ _____ ________ _____ __ ____!”.
After some thought, I can’t be so quick to do that. I could say I hate you, that you’ve done nothing but cause damage in my life. I’m not so sure it’s all true. Wouldn’t that mean I would have to hate everything about what’s happened to me since I met you?
I haven’t figured you out completely. I don’t know why you have to be so slippery. I wish you would stop progressing so I could at least get a handle on last week’s issues. Don’t get me wrong. I appreciate being able to appreciate, much more than I used to. But, you really are pretty selfish sometimes. You should learn to respect the schedules I make. Stop needing more attention than my stuff, my work, my relationships and my rest! You act like a 4 year old, tugging at your mother’s pants, saying “Mommy! Mommy! Mommy!”, while she’s trying to talk to someone.
The pain you cause, at best is manageable, at worst unbearable. Still, there’s a lot of wisdom that comes from the other side of that. When pain is at it’s worst, I feel like nothing else in the world exists but my body and my concentration on fighting it. You know, how almost everything else disappears when we get together like that? A person can’t think about things like world issues, politics, relationships and the like, when pain demands all of the attention.
When I come out of an episode like that though, everything comes into focus starting inward and working outward. It’s sort of like having a reset. Some of the first things I notice are the lack of that kind of pain and the fact that I can now focus on other things. It’s forced me to have that reset, then come back appreciating even the “normal” level of pain. Or, sometimes there is almost none at all.
I can say the same thing for most of my symptoms. They can work just like pain. Things like lack of energy, lack of balance, heart trouble, lack of appetite and the others can get better and worse. They can yield the same results, in that, they’ve helped me appreciate every ounce of energy I have, even when it’s only a fraction of what it used to be when I had my health.
I also have the ability to see illness, disability and pain in others because I know what it looks like in the mirror. Adaptability, there’s an important one. I’ve had to put my old job, hobbies and exercise routine into the “used to be” pile. Then the “who I am now” pile needs to be filled with lots of new things. I’ve become skilled in the difficult art of self acceptance. Stuart Smalley would be proud.
I’d ask for you to leave but it doesn’t seem like that will happen. At least not anytime soon. For now I will keep trying to focus more on the good stuff. I guess it’s a love/ hate thing. I hate how you can be terribly demanding. But, I love how things seem much more clear. I now know the difference between what I want and what I need.
Love, hate, your’s truly,
Sincerely,
Shawn
Dear Thyroid, nnI know I didnt listen to you for several years. You were shouting but I had cotton in my ears.nI want to thank you for your support, inspite of my indifference . I want to tell you that u are one brave, hardworking part of me. nI am proud of u . I love you and promise to support u always!nI know u are only getting better, waking up and recuperating.nI know u will never give up.nnI love u, my thyroidnnAlohashikha