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Thyme For Literary Healing: The Emotional Expense Of Disease

Post Published: 02 August 2010
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Category: The Emotional Expense of Disease, Thyme for literary healing
This post currently has 10 responses. Leave a comment

We’ve discussed the financial hardships and repercussions of disease, but what about the emotional toll disease takes. It seems to me that the cost is far too high. Relationships are forever altered or destroyed. Our personal lives are turned inside out and upside down. Finding our way through a prism riddled in anguish, heartache and anger is seemingly impossible.

Let’s talk about the emotional toll our diseases have taken on us – how high a price we’ve paid and/or how we’ve found our way through it. If we share our stories, we’ll discover similarities, gather tips about reinvention in this area and learn so much from each other.

Here are a few questions to get us started:

  1. Do you feel that your disease(s) have come with an emotional price tag?
  2. What have you emotionally endured?
  3. Did you ever imagine, in a million years that you would have to pay an emotional toll for a disease or diseases?
  4. What do you think your friends and family have paid emotionally as a result of your disease?
  5. Have you emotionally been able to reinvent yourself and your relationships?

Ready? Set. Write!

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10 Responses to “Thyme For Literary Healing: The Emotional Expense Of Disease

  1. Donna says:

    1. My disease has most definately come with an emotional price tag from diagnosis until now almost 4 years later.
    2. I have endured years of not understanding my symptoms so therefore lived in denial. I took klonopin for anxiety from diagnosis until a few months ago. I attributed my need for numbing myself to keeping the peace to alleviate stress. It helped but at a price because I allowed myself to be bullied and did not remember who I was before cancer. It made me weak in the head.
    3. No, I never imagined the emotional price I would pay and I’m sad to say that I could have been better about understanding others with chronic illness. Emotional indeed!
    4. Yes, my family and friends have paid a price emotionally as well. If I am emotionally distraught how can that not make them emotional as well? It goes hand in hand. Sad, but true.
    5. Yes, I am in the process of reinventing myself because I stopped numbing myself with anxiety meds and realized that I have been swinging hyper to hypo for years without really realizing it which was not pretty. I am in the process of not accepting this as my destiny. I want to live a full and joyful life to the best of my ability and be something more than I currently am.

    Please don’t think I am judging anxiety meds, they were a necessity for me to still function with cancer but after I should have weaned myself off and I would have been better able to recognize the hypo/hyper symptoms instead of just ignoring them and accepting my health as it was.

    We can all get to a better place, maybe not a perfect place but a better place 🙂

  2. Linny says:

    Yesterday, by Linny the butterfly, not beetle!
    I took my daughter shopping for her birthday. She is a grown woman of 33 on the 10 th of this month. We live just outside the Chicagoland area. This was a trip that nearly didn’t happen. This is a trip that I still am trying to recover from.
    I just got out of the tub. I have found a recipe for making myselve start over again. Today I am recovering.
    This is because I have Graves, not because I have a daughter!
    Last night I finally went to bed at 2. I could not relax enough to go to bed. Oh I was tired, exhaused. But I had to do things to calm myself down. I watered my flowers outside front and back between 10 and 11…..I tryed to watch some TV but I couldn’t follow anything. So it went. Now I’ll tell you why.
    We, my daughter and I were traveling on the Chicagoland Highway at quite a clip. My daughter was driving my car. This kind of driving is very stressful for me, but not for her. She is very strong, almost to a fault, but not her fault.
    Her father had a heart attack at 34. She then only eight, her brother 5. Myself, I was 32. So many events happened between then and now, I would need a good many pages in a book to tell you. So we’ll skip ahead to yesterday.
    We were within miles of the shopping mall we planned to shop. This was a date to get together that was rare. She will not allow me to talk about my Graves or anything related. She will blab over me if I try. We argued just two days ago and I had offered to just give her the money instead of my going. Arguing with her is pricey. It takes days out of my week to recover, almost as many as her grandmother , but not quite. You see, they both think I’m faking, or crazy , or I don’t know you’d have to ask them. Oh and lazy too.
    Anyway we were almost there and we both heard a noise. The sun roof was open and I ducked because I though someone threw a brick off the overpass,it was that loud. But then I heard more noises, I turned the radio off, she had thought my car was driving odd. I thought it was the way she excellerated. It’s a BMW. Now don’t think we’re rich, we’re not, my husband is a retired teacher and coach from a highschool. I’ve been remarried 19 years. Is wife ran off with her boyfriend so he had his 2 children and I had mine…..Bradey bunch wanta be’s. They all are on their own so he spoiled me so I would never be stuck with car problems, again, my health.
    Well now I look at the dash. (!) in red! FLAT TIRE!
    well we managed to pull to safety.

  3. Linny says:

    Wait theirs more…..I will try to sum it up. BMW SERVICE STINKS THEY LED US TO BELIEVE WE WOULD NEVER BE STUCK> IT WAS SUNDAY NOTHING OPEN< I AM FALLING APART< MY DAUGHTER IS UPSET< WE HAVE TO DRIVE ON THE FLAT<NOBODY TO HELP< AFTER HOURS I HAVE BEEN CONNECTING WITH DISPATCHER THEY CAN”T FIND US> WE GET TO THE MALL< I TALK TO MY HUSBAND WHO THEN HAS TO COME GET US Then I try to be still and let my daughter shop, we are better….I wander a bit on my own, try on a bracelet, wander some more. Then notice I HAVE LOST MY BRACELET> It was the straw that broke the cameals back. I sat in Norstroms by the excalators and give couldn’t hold it in anymore. I cryed and I cryed. I didn’t even care where I was. I cryed. This is what Graves does. I cannot function normally anymore. I make a fool of myself and embarasse my daughter. We did get home and so on. I will end here if you’re still reading this sad story. Just Yesterday, Linny

  4. Donna says:

    Oh Linny, I am so sorry you had such an awful day. I have learned that I can’t push myself like that and if I do I pay the price so I plan for that too. I wish I had an answer for you about your mom and daughter, I find that to be disturbing. I have forced my husband to read stuff and it has helped. I made sure I found the best info that did not sugar coat what we go through, that talked about the very serious effects and the importance of a normally functioning thyroid. Maybe you can do that?

    It is a sad story but it is your story and it deserves to be heard. You deserve to be heard! You are not lazy, you are not crazy and you are not faking. We all know that but they need to as well. You have a life long condition that will never go away. This they should be able to comprehend.

    Linny please try to find a way to share some inf with your daughter. Even if you send her the information by mail and give her some time to absorb it. I’m not certain about your mom but at least your daughter. Maybe it is scary for her and she fears having to be a caregiver? But you deserve to be understood honey, we all do!

    Hugs to you!

  5. Linny says:

    Donna, your words have really been emotional for me. I can tell you understand, I think you can realize how meaningful that is to me.
    This link is the first time I’ve shared so much with others. I am trying so hard to get it out, because I’m hoping that sharing all this will be another step toward the very best I can be.
    My husband has trouble showing emotions, but I know he loves me. His way is like the car. I don’t care about cars. I had valued it because I felt so safe. Not with that car, not anymore. They didn’t help me. I was so glad I wasn’t alone! I used to have to drive to the city to see my daughter, right downtown. It terrified me. She had my first official grandson nearly 6 years ago and I had to see him. I forced myself to drive. I had to sleep over, I could never do it both ways in one day.
    After he was born Christmas Eve I drove home exhaused….I got lost and spent hours trying to find my way home. I got in a fog and couldn’t think!

  6. Linny says:

    Donna I understand too about the medicine. I have zolfoft….I would love to not have to take it, I think it is kinda like a necessary evil. Helping and hurting, I try to keep the dose as low as I can. I am sorry that you have cancer. I had a goiter, but the nodules were ok, so far….I hope nothing else but I had radiation because I thought that they were right. I wish I could trust that they know what their doing, but I don’t think they do………YET!

  7. Donna says:

    Linny, it is good to get it out and necessary. Please feel free to do it here anytime you want or need to. You help us to feel we are not alone in this crazy journey, no pun intended, lol!

    I understand completely, it is a struggle to just get through a day sometimes and people expect us to be what we always were and that in itself is draining. It’s not possible either, we have good days and bad days and those that love us have to understand or at least accept this as real. It is our lives and if we could make it all better just because we and everyone else wanted that we would but it’s not that simple. But I do think when we know that others understand we regain hope and we find a new approach. We feel validated and that it itself helps so let it rip. If you only start with us that is okay, next you will find an approach to get those that are still choosing not to get it to well, get it!

    Please keep writing, I promise it will help. Things like cars are important to people for different reasons but once you have health problems stuff does not have the same meaning as feeling well!

    You find a way that works for you and do the best to avoid the negative people when you can. Your daughter will come around. Send her this way, lol. Print some stuff so she understands you stand united with the rest of us lazy and crazy people!

    Don’t beat yourself up, you are doing the best you can and noone can ask for more than that 🙂 Hugs to you!

  8. Donna says:

    Hey Linny, just saw your comment about meds. I have no problems with depression or anxiety meds, they help people and I do not see it as a weakness at all! What happened to me is different though. My son was 5 when I was diagnosed with follicular thyroid cancer and it was necessary for me to take them because I had to function and they helped me immensely. The problem began when the thrill of surviving ended and I contined to take them. I did not realize that I was masking my symptoms of being hyper and I never attributed getting sick so much more to my thyroid levels not being right. I assumed my immune system was dead, I was peri-menopausal and anything else I could think of. I only saw my endo once a year. It took me time and then I found this site and realized I had to figure this out, it was not okay to stay in my numb zone. I’m still hyper but I know it and I can get to a better place but I am choosing to not mask my symptoms with klonopin. I realize that I was flirting with disaster just to stay unemotional and that is not okay. I believe depression and anxiety are very real but I did not have those issues necessarily and getting myself off the klonopin has given me a clear head to deal with this. That being said, I would never judge anyone for needing them. Not ever, I just want others to know what I did to myself in hopes that maybe it will help someone sooner as opposed to later because each day is precious.

  9. Linny says:

    Yes they do help me. I am not as hyper as before but sometimes…..
    My children are so important to me. My daughter has twin girls too. Her three and my husbands daughter has 3 boys, his son has a son, I love these children so much. Nana is my favorite thing ! My son is wonderful, he is very tender about my issues. He has a great relation with my husband. I do have many things to be grateful about. My son is planning to move far away. Santa Fe, he met someone wonderful, I am happy for him, but this will be hard for me. I want him to be happy.
    I will need these med’s and I’m glad for them. But…..
    I think they have their share of side effects.
    I still have hope. I still can pull up from these days. I will be as low as low and then suddenly it turns like wind and I will be ok. I will fight to be all I can be. Thank you for letting me feel ok about dumping…..I have to find people to talk to. xxxxxLinny

  10. Donna says:

    Linny, you must be an awesome Nana, I can feel the love. Sante Fe is beautiful and very relaxing and calming. That’s a trip you would enjoy! I think what you expressed about your days is true for all of us, we are fighting the good fight. Just being here and opening up indicates to me that you will get there from here. It’s a tough road but one worth fighting for. You are very welcome, please continue to reach out. It makes a big difference and remember that you are heping us too:) Hugs!

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