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Chronic Snarkopolist: Ghost Stories: When Did Sick Get Scary?

Post Published: 23 June 2010
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 16 responses. Leave a comment

Hello my loves!

Last week we discussed our worst medical moments.  This week I want to delve more deeply in our collective psyches. Let’s pull up our Freudian sofas and lie back.  Go deeper with me.  So – when DID we collectively and as individual autonomous beings first realize that being sick was gross or scary or awful?

Where we, as people, STOPPED HAVING A SAY IN WHAT OUR BODIES DID. And THAT is when it started getting scary. A bum knee we can manage with that because it doesn’t make us “different” we can just struggle on.  But a bum brain or chronic medicated issues– THOSE MAKE US DIFFERENT – it turns us into (check the box) OTHER- scary style different. Visions of losing it – all those times I’ve lost it – and I’ve seen others lose it- appear to me.  Being a “good girl” I’ve watched as old people were tied to their wheel chairs and then went rigid and spit food everywhere – they peed their pants. They threw food on the floor and patted my hair leaving a sticky mess on my face. “You remind me of my own granddaughter, you’re so pretty- so pretty.”

My body would sink deeper into its own skin willing myself away from them so they wouldn’t TOUCH ME TOO DEEPLY and mar me with their unforgivable stench. We all have our fears of what is too sick.  I have my own visions of sick and I automatically associate it with “old people” and their gross talk (not unlike my own more recent talk).  And their incessant need to discuss their daily poop consistencies (not unlike my own  more recent talk). My Aunt Francie never married.  She had no life outside of making food for her brother, Uncle Ralph, making candles of various animal shapes and putting them all over her house, believing in ghosts, and coming down with various maladies.

She used the doctor’s office visits as her socializing. Old yet still firm and agile she’d crisply and quickly walk to the “machine” and get in for her trip to the doctor’s office. The machine was, in this case, an old 1962 pea soup green Ford Fairlane Hardtop that she shared with her brother.  She would go and find a REASON to discuss SOMETHING, ANYTHING that was ailing her. If she could not make it to the doctor’s office she would corner my mother and tell my mother about her ailing health. “A long stringy, almost noodle-like substance came out of my nose last night. I really need to go to the doctor’s office and tell him about it. It just doesn’t seem right- it doesn’t.”

I would always find a reason to excuse myself from these talks. They both disgusted and frightened me.  Just as even now I am appalled and disgusted and revolted by my body’s betrayal of me. I HATE bodily fluids and the “noodle’s” that come out of my nose. I CERTAINLY don’t want to hear about them then or deal with them – but at that young age – even less. “Mom, I need to go concentrate,” I said. Which was family code for, “I’m going to be a minute in the bathroom, leave me the hell alone.” And of course, My Aunt Francie came back to spy on me, or “check in” during one such escape. I had made an especially large turd in the toilet and was about to flush when she called my mother and said, “Linda – Linda come quickly, Melissa has the best BM’s, I so wish I could still do this.”

Humiliated at the intrusion into my privacy, which at the time I just wanted to punch her in the cooter and run. I could think of no punishment more suiting than a life of painful BM’s TELEVISED LIFE IN FRONT OF THE ENTIRE WORLD for the mortifying embarrassing way she so crassly disturbed and discussed my BM’s. MY SACRED TIME. This was MY PRIVATE TIME. This was my pooping time. I was CONCENTRATING. Stop oogling my poop. Just flush it and leave it be to the ether from whence it came. And because I grew up in a poor household –I didn’t even have the good fortune to have an easy FLUSH toilet – I had a ritual where we had to fill water in a plastic kool-aid smile pitcher and dump it quickly into the toilet as I was pressing down on the handle to get JUST the right flush mechanism to happen.

So – at this moment – in another person’s house – I was GRATEFUL to just be able to FLUSH the shitter and let it be GONE.  But NOOOOO. No – she has to come and look at it. If it were a different era she would have snapped pictures and uploaded it to facebook by now. Thank heavens it was the 70’s. My mother, always quick to respect her elders just nodded polite and said, “Well, she’s young.” So YOUNG AND HEALTHY were encoded for me into one sentence.  Later, I learned this is not the case. And when I got sick, I got ill at a relatively “young age” and now I’m chronically ill but look “younger” than most.  I don’t even “look sick” most of the time.
Yet – I know that there are many older people who wouldn’t blink an eye off the illnesses or surgeries I have been through.  So I can “fake” my own health by pretending to be less sick or by not talking about my illnesses. Just hush it on up and BE SILENT. When I worry about my bowel movements or my laxatives or my kidneys I worry as a woman who is CHRONICALLY ILL, not as a YOUNG woman or an OLD woman.

Yet – I do it QUIETLY.  I have two sorts of friends, my, “healthy friends” and my “sick friends” because my “healthy friends” do not like to be reminded of illness.  They have their own terrorized thoughts brought on by past aging relatives and visits to the nursing homes. Somewhere along the way our collective discussions of health and wellness broke down.  I now walk through life in fear that I should be DISCOVERED A SICK PERSON.  Only my good friends and my doctors know – REALLY KNOW.

My medium spicy friends can read about it on facebook and say, “Oh- I didn’t REALIZE you had all that going on with you.”  And I feel… a little bit like a liar… but.. WELL I AM A LIAR.  Every day of my life I lie.  I lie when I get out of bed and put clothes on without doubling over.  Or when I double over – I stand back up again and GET ON WITH IT. I lie every day I make a joke about the horrors of healthcare without stabbing out someone’s cruel eyeballs.

Every single day that I move forward – I am also lying about my own losses and my own fears.  Because 100% HONESTY costs me more than I have most days and so you get jokes and when you don’t get jokes you might get tears. But I have far fewer to whom I feel safe to cry than to whom I tell jokes.

And THIS is where I began to HATE ill health- or at least the bad functioning health. Keep in mind that it is so hidden too. We do not joke about it or talk about it. Suffering in general is not something we do very openly. We shield our children from the hurt and sick animals and people least they become scarred, never thinking they might develop something halfway crazy like EMPATHY or COMPASSION out of it.

Meanwhile, collectively, we also fear illness. We push the sick into hospitals – hidden away and we, the sick, become the polluted and polluting. We even begin to loathe and resent ourselves when we don’t function well.  I resent my own bad health.

Even doctors generally cannot FATHOM how we DEAL with what we deal with. They INTELLECTUALLY UNDERSTAND IT- but they cannot FAHTOM how we deal with it.  And frankly they don’t want to.  A surgeon will discuss scientifically all the details of how and why something will work – but rarely stops to COMPREHEND what it would be like for his wife or his mother or his daughter because doing so costs him a layer of love and if he has to REALLY LOVE ME when he deals with me then he has to CARE ABOUT ME and if he has to CARE every patient then he might just have to open his heart more and more. And then that surgeon will also have to come to terms with his own fucked up past about what being sick means (and how he cannot single handedly champion it into submission by being a surgeon).

I hate being sick.  I hate it more than I hate anything else on the planet.  I resent my own illness.  I resent it to the ends of the earth and back again.  And as much fun as I make of it – I fear it too.  I have to go pee in a cup to see if my kidneys are losing more function.  And I know they are.  But I know that even if they are- I have to be here with them whilst they do.  And I still have to have more surgeries during that time. And how does one joke about it.

Aunt Francie never told me about this stuff.  All she did was make waxed candles by the dozens and set them around her house.  And she talked to ghosts.  She did!  And she was terrified of the back bedroom.  She refused to go in there.  She once admitted to my Aunt Sally that she heard ghosts talking in there and she was positive that the ghosts where in there.

My Aunt Sally was tickled pink by this because she thought my Aunt Francie was a loon – and everyone loves a loon.  But now I realize that Aunt Francie was just afraid. Period.  She was terrified of everything and when she didn’t have time to socialize at her doctor’s office and when she ran out of wax, she got quiet with herself, those voices she heard were probably creeping up on her – telling her things she didn’t want to hear. And now I hear what the voices inside her head told her. And now I have compassion for her.
Once, on a double-dog-dare I tried to shimmy the lock on the back bedroom door once to go in there and see what was back there.  Uncle Ralph slept upstairs in his own bedroom and she slept downstairs on the sofa.  I wanted to see what could make her so afraid. So when she was out tending her garden I sneaked in and peeked through the lock.  Everything was covered in a sheet. It was all pretty boring. It may or may not have held a ghost- but if it was one – it wasn’t a very angry or rambunctious ghost. I used a trusty hairpin and wheedled it for what felt like 20 or 30 seconds till I felt it click. The door opened!

And then – Aunt Francie’s steel arm clenched on my right shoulder.  “Child what are you going into my bedroom for? This is a private area, I sleep here.” Damn! Damn DamnDamn! “Aunt Sally said you’re afraid of ghosts and I wanted to have a look around and find out why are you are afraid because I don’t see anything in there and I want to see if you have any other wax animals in there and I’m bored and there is nothing else to do and you’ve looked at my poo and you owe me one.” Or something babbled out. She shut the door in my face. I didn’t see ANYTHING. Nothing. NOTHING AT ALL.  “This room isn’t for you child.  There is no such things as ghosts. Those are just stories we tell to frighten children.  No one believes in ghosts. No run along.” And she smacked my backside as I left. But then – the next day something strange happened.  She called me.  And she asked me to come over and sit with her.

And in doing so she talked to me.  Her “machine” wasn’t working and she couldn’t get to her doctor’s appointment. And she felt sick and she was worried that she was getting ill and she WAS afraid of the room and she had run out of wax and that room hadn’t been opened in 15 years and I was the first one to open it and now she was worried.  And she held open her hand and gave me a big Styrofoam cup of treats. It was a bribe to spend the day with her.

She wanted company.  She was lonely and afraid and nervous and she didn’t want to be alone in the house.  THIS was honesty.  Above all else in life I value loyalty and honesty.  And that day I gave her both in return for her story. I sat with her and listened to her tell me everything about her illnesses – all of them.

Everything she should have told her doctor – from her scraped knee and how it had gone white and has puss on it and was sticking to her stocking see – and she pulled it up and up came the scab (because who would think of a bandaid?) and I chewed my double mint gum and sucked on my butterscotch candies and nibbled my Brach’s bribes.   But I would have sat with her without the candy. She was lonely. And her sickness was in her MIND.  This was the first time anyone has ever called me “wise” and “funny” in the same sentence.  And it stuck.  I am no more wise or funny today than I was that day. What I am is someone who gets it. I saw the ghost that day- It was the ghost of LONLINESS – OF FEAR – OF OLDA GE – OF BEING NOT UNDERSTOOD. Of being the crazy cat lady. Of doctors hating you for being unloved and unlovable and of them not being able to fix it. I got it then and I get it now. And I never ever hated her for being a doddering old woman again. She wasn’t crazy any more than I am. She was just fucking lonely and didn’t have anyone to love her – to really love her. And that was not her fault.

“Little Linda (that was her name for me because she was never arsed to learn my real name) you’re so wise and so funny- come visit me every week.” “I will Aunt Francie, ‘but you need to stop picking that scab and keep a bandaid on it or it will get infected.

Here – stop picking your nose too – use a kleenex.” And that was how it went from then on.  I didn’t LIKE HER. But I feared her less. I feared the ghosts MORE because after that I too believed in them and I still do actually. I still do.

And her pie was for shit.  Everything in her house stunk with age and ill use.  I don’t know what that woman was doing but somehow salt and sugar and cornstarch were all the same in her cook book.  When she died every doctor in Mansfield, Ohio breathed a collective sigh of relief and had more open space for the “truly sick.” But to ad to this – I want to say—we all need space for our own individual illnesses, our loneliness, our fears, our STORIES – to share and to love and BE WHO WE REALLY ARE.  I KNOW THAT SOME DAYS I’M REALLY SICK. AND SOMEDAYS I AM JUST LONLEY AND WANT HELD.  Some days Aunt Francies Ghosts have me by the short hairs.  We all need space for our freakiness.

We’re all strange people and beautiful people and weirdoes.   There is huge big giant love inside of us… and there is also a landslide of crazy that is not really crazy.  It is just names we call it to pathologize it and make it wrong.  It is just YOU and ME being PEOPLE.  Sometimes we are ok. And we fear the big bad sickness too soon and too young.  And we fear what is inside of us.  And I owe myself a FUCKING APOLOGY today for fearing my own health.  I’m sorry Melissa  I love you.

Yes – it is fine to make fun of it and have a good laugh.  But sometimes we need to meet each other with some genuine beauty too. And some understanding. Let’s have a go at it shall we! If we didn’t ask for it – we might as well GO BIG OR GO HOME! PS – I do not have any noodles coming out of my nose. But my last surgeon did play a beautiful symphony on my small intestines.  I hear it might well win an award.  Next week is my pooper surgery too with Doctor Mchotterson oh my! What about you? Any scary medical things happening for you in the near future? What about repressed or not so repressed memories? Do you carry the scars of your bowel movements being scrutinized by the elderly? Did you watch someone have seizures when you were young and not understand? What do you think it is about our collective process that makes being sick a BAD THING and makes us sweep the sick and dying under the carpet? I’m interested in hearing your views? Now that we ARE sick are we that bad? A friend of mine told me, “Girl, once I told him about my thyroid condition he ran like a dog.” And I was appalled.

I wanted to BRASS KNUCKLE PUNCH THAT ASSHOLE IN THE CHEST for running off because my friend is gorgeous and sweet and hot as free flowing lava. What makes people run away from easily controlled illnesses? What makes us hide our illnesses or apologize for them or feel they are so awful?  If you have me – you HAVE my illnesses too. So why then do I never look to date because I realize that dating a woman with illness is more than most men would wish so I don’t even ask that of him. Am I worth it? I WANT TO BE! Why do I walk without a cane as often as I can even when I REALLY should be using my cane for balance on most days? Why do we do it? What is it about our upbringing and our cultures? What stories do you have hidden away? What armchair theories have you woven for me? What tears do you need dried? Gather around – we can all do this together.

This is OUR VENUE. And I want to get it out. I’m sick of the silence but have yet to find any way to deal with it other than acting like a “normal person” out “there.”  Where our stories- OUR HEALING STORIES – let us heal with them – each other and ourselves. One of my closest friends said that to me – “I cannot be your friend anymore if you do chemo – because I cannot watch you die.”  In those moments I felt my life shatter – because I heard in her words every single person who has abandoned the sick resonate around the world. When we need you the MOST you throw us away the hardest. But why? WHY?

And this what I am trying to figure out. What is it she REALLY feared? And when I didn’t die what then? Who was better off? In fact – I was funnier and smarter and more kind than ever. If she had stuck with me maybe SHE would have healed a little too.  And maybe there is fear in the healing of all our wounds?  I try to have compassion – I try to use humor because a spoon full of humor and funny is easier than me shoving it down your throat and calling you a hateful selfish fucking cunt how dare you abandon me.
But sometimes – sometimes there is no room left for anything but honesty. And right now I’m in a place of honesty – right now. I’m not afraid, I’m not sad, I’m not angry or particularly happy- I’m just wondering.

What are your stories? If you share them maybe we can all start understanding and healing a little. I’ll be seeing you next week!
Same time same place! Kisses!

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16 Responses to “Chronic Snarkopolist: Ghost Stories: When Did Sick Get Scary?

  1. Sarah Downing says:

    What a brave and talented writer you are, Melissa! This column had me in tears and I could identify with so much of it. Illness has HUGE stigma attached to it (in fact, I’m writing a column about this right now) and it is tough to deal with being abandoned by those around you who fail to understand or even care what you are going through or maybe, as you said, they just can’t deal with it because they are ignorant and afraid. We are the ones who should be afraid and yet we are braver than ever because we have to be to survive and to carry on.

    Seeing people lose their bodily faculties and pee into a bottle or a portable toilet really brings it home to me. Seeing my mother-in-law die of cancer and watching her fighting for her life because she didn’t want to leave her boys no matter what – she didn’t care about the pain or the humiliation of her condition, she just wanted to be there for them. That was probably the most hardcore glimpse I ever got of illness and death, although I have had close friends before that who would cut themselves and suffered from bulimia. Seeing someone like that, wanting to help them and realising you can’t – the futility of it all can kill you.

    Hugs,

    Sarah

  2. Melissa, I am LOVING this column. This article is just everything we needed to hear.

    When we need you the MOST you throw us away the hardest.
    Why is this true? Because it is true. I am so very tired of reaching out to my group of friends to have them respond with silence. I am so tired of trying to speak on what I’m dealing with to have them respond with questions that make the situation awkward. Why does talking about cancer have to be awkward? Why is it so taboo? When I’m being open and honest, why can’t they respond in the same manner?

    Melissa, you rock! THANK YOU for being honest.

    xoxo,
    Joanna

  3. Dear Thyroid says:

    Melissa’s bravery took my breath away. I’m so proud of you, Melissa. This column brought me to tears. All of the points you mentioned regarding fear of illness, and pairing it with your family’s history, it was just a flawless read.

    Great, great, great work. I’m in awe of you, and your courage.

    Beautiful story, tragic, and more than anything painfully real…

    xo

  4. yogichic says:

    Melissa,

    Wow, very powerful.

    People fear the unknown (those who have never experienced a major disease or illness) or fear that one day they may be just like us (those who have).

    When I was diagnosed with lupus, 90% of the people reacted with shock, disbelief, then would ask, um, can you tell me what lupus is? I found myself having to educate, advise and put others at ease.

    Then when I was diagnosed with thyroid cancer, my brother and sister-in-law who also had TTs but not cancer were only interested in comparing surgical notes and scars – never talking to me about how I’m feeling or sharing their feelings. Most people, I now realize, didn’t really ask me any questions or talk about my thyroid cancer. I believe they just wanted to change the subject because they were uncomfortable.

    How ridiculous that the day after I came home from surgery I was serving coffee and muffins to a friend who came by to visit me and I’m acting all nicey nice.

    Now I’m pissed thinking about this. WTF? I’m the one that needed to talk, vent, cry, scream, yet I had to pacify everyone else.

    So what now? It is extraordinary and fabulous to know that I have a place to visit whenever I need to talk, vent, cry or scream. I am so thankful to have found a second home here at Dear Thyroid.

    ☮ ♥
    Monica

  5. Melissa Travis says:

    Hi Sarah –
    thank you so much for replying!! Yes! I’m glad you identified with it – when I began writing I was trying to find my humor bone and I just couldn’t, the snark wasn’t flowing. I’m glad you’re also writing about stigma and illness. It is important to really investigate where these things come from and REALLY check our own inner stories that we’ve held inside.

    If I could run away from illness I WOULD – I WOULD IN A HEART BEAT!! And yes we are brave! And I love your story of your mother in law – being so much in love with other people that she wanted to give of herself MORE than she was worried about her own embarrassing body functions.

    There is healing in these stories! There is healing in these memories. And in having pity for your friends who cut and have bulimia for their own self-destruction and their own inner pain so fierce that they have to MAKE PAIN where there isn’t any organic pain there. I have genuine compassion for this. There is healing too in these stories. And there is hope for people who realize their own beauty and their own abilities to HEAL and in sharing their own pain TO BE HEALED AND SHARE AND HEAL OTHERS WITH THEIR STORIES.

    Thank you for sharing and for writing. I adore you too!! Truly!
    Much love!!
    x
    Melissa

  6. Melissa Travis says:

    Hello Joanna,

    My heart truly crumples for you when you tell me you’ve reached out to your friends only to be stonewalled. Yes! YES I KNOW THIS DRILL!!! I’ve heard it and seen it a dozen times – in myself and in my friends.

    It is hard to BE DIFFERENT – even if being different means “Oh- I happen to have this thing – this wee thing – this cancery thing that I’ll be dealing with -don’t mind it.”

    I’m so sorry that it is your experience too. But I want you to know that it is a NEARLY COLLECTIVE EXPERIENCE to lose friends (many of them – not all of them) when you get sick. Even if it is a passing sickness and you get better. Getting sick does this crazy thing – it is a call to arms of the REAL FRIENDS IN YOUR LIFE.

    My dear friends and I who have cancer and auto-immune illnesses – things that NEVER GO AWAY (or take LONG YEARS TO GO AWAY) – count our friends and often our spouses as our greatest losses, along with economic freedom and the knowledge that our bodies won’t betray us.

    But honestly Joanna- it is the betrayal of our friends that stings the most. BECAUSE YOU WOULDN’T DO IT. YOU’D STICK THROUGH IT. RIGHT? You’d be there for your friends. But people are not always so able – so aware, so grown. They cannot handle the magnitude of even THINKING about illness let alone what it MIGHT MEAN.

    “Don’t harsh my mellow” is more of what you get – rather than REAL COMPASSION. And for that I am sorry. It brings with it only choices you get to make – to make new and better friends – and to hold on to the REAL FRIENDS THAT YOU DO HAVE.

    As I have gotten sicker – I have watched my “healthy friends” distance themselves more and more and more. And I from them. To the point where I often ONLY tell my “sick friends” THE TRUTH about how I’m feeling and my “healthy friends” “meh – I’m not well”… because I have such a distrust for “healthy people” and their abilities to REALLY TRULY deal with my health and the situation.

    I realize I’ve written a book to you – but your reality is something that my friends and I have dealt with again and again. The betrayal of friendships – of people who cannot or will not understand us. The pain of loss of relationships in addition to being sick or going through an already painful and scary ordeal. AND I’M SORRY.

    There is only truly knowing your community of people here and your support groups of friends who can and will support you. Knowing the few friends who WILL STAND BY YOU and trusting them. And knowing how to forgive without EVER EVER forgetting – because YOU DESERVE BETTER. You do. Don’t ever forget it.

    Much love.
    Melissa

  7. Melissa Travis says:

    My Dear Yogichic – Monica!,

    As a fellow lupus patient – I feel you. I truly do. Having to educate people about WHAT this or that auto-immune illness is can sometimes make me TIRED. Especially when I have a simple request like, “Oh – I need to stay out of the sun today because I have lupus and I’m not wearing enough SPF.”

    AND THEN — I get the 3rd degree. I realize that it incites QUESTIONS. But it was that or I had to go out in the sun on a day when I expected to be INDOORS. And then people find it amusing that the SUN can cause a FLARE of lupus. Or they say things like, “Wait- How can you have lupus AND thyroid cancer AND hashimotos AND and they rattle off several more illnesses that I DON’T WANT AND DONT REALLY FEEL LIKE TALKING ABOUT AND DON’T REALLY IDENTIFY WITH AND DON’T RELALY NAME IF I DON’T HAVE TO….

    And I am forced to explain how auto-immunity is joyous like that – and fucked up and you know – does strange things. And they shudder and go – “I don’t know how you handle it – I’D JUST KILL MYSELF – I’D KILL MYSELF IF I HAD TO GO THROUGH EVERYTHING YOU GO THROUGH EVERY DAY.’

    And I look at them in the eyes and think– “Hhrmmmm.. No- you’d probably just get on with the living part because the dying part isn’t any easier.” But I don’t SAY IT OUT LOUD – Because that is their ignorance and fear and stupidity. And it is their discomfort.

    And so YES – I get it. When people are AROUND ME – I want them to LIKE ME FOR WHO I AM – and yet I want them to RESPECT THAT I AM ALSO SICK and dealing with ILLNESSES.

    It is complex and complicated.

    And that you should have surgery and be serving OTHERS the day after is so arsed. I just want to scoop you up. NO NO NO. We have it so backwards. We are allowed to be loved and coddled. We are allowed to be snuggled a little bit. We are allowed to break down and cry too!! We are allowed to have others BRING US TEA AND CAKES AND SERVE US. And ask us HOW WE’RE FEELING. And if they cannot handle it – they need to stay away – and come back when we can just be friendly and playful.

    Monica – I’m so sorry that this is part of your story. Sharing it is HEALING yes- but it makes me SO ANGRY – AND SO UPSET that you never got to fully have your day after HEALING. Where you were coddled and loved and let to cry out your fears and your tears.

    I know that so often I FEEL a sense of PTSD after every surgery and procedure. And so often I just sit there shell shocked – because people think I am “old hand” at it by now. But EACH SURGERY and procedure leaves me marked. And I’m tired of it. And I want my fears acknowledged too!

    So know that YES – Dear Thyroid is part of that place – this IS a place where stories are shared and healing happens. Your story of healing takes place HERE. And I’m SORRY – collectively that you were failed after your diagnosis AND after your surgery. From one fellow lupie to another – I’ve got you!

    love love love!
    Melissa

  8. DAT says:

    Hi Melissa, This was an amazing read. It gave me so many things to think about. First though I want to wish you luck next week. My grandmother always said “When you have your health you have everything” and I now know she was correct. In her last years she would touch my hands with her hand and tell be how she had beautiful hands when she was young too. We were connected in so many ways, we communicated through our eyes. The last time I saw her my aunts were all standing around discussing her, in front of her, as though she did not understand. It pissed me off and I said to her “How does it feel to not even be a part of a conversation about you when you are right here, I mean you can see and you can hear and I believe you can talk right?”
    She just gave me the grin and the eye thing and shook her head. I am crying my eyes out because even those that love you do some pretty stupid shit. It is why we shut down and don’t talk because sometimes it is better to live in your own world and not have to respond to foolishness. Thank you for putting this out there. And again, good luck next week. I’ll be thinking about you.

  9. Cetta says:

    Thank you for expressing so eloquently what so many of us go through. It’s hard and scary and …exhausting. I find myself not wanting to make new friends because there will come a point where I will have to explain all of my autoimmune problems to them and…what then? The usual. The questions I don’t mind so much, but what really gets to me are the ones who think the can “heal” me with vitamins or Reiki or whatever. Like I haven’t read all there is to read on my problems. I don’t want you to heal me, I just want you to be my friend – to listen, to encourage, to just be there. Even my husband doesn’t get it most of the time.

    It sucks.

    Thank you for writing it. Good luck next week!

  10. Nicole Wells says:

    Melissa,

    Thank you so much for voicing this so strongly – I’ve thought about getting new friends just because of how little understanding and support I’ve gotten, but I realize that it would be almost useless. Healthy people don’t really WANT to know, it scares them so instead they make it seem like you need to “get over it” and not be so “negative”.

    On one hand I need to talk about my illness, but on the other, I HATE TALKING ABOUT IT. The only place I feel comfortable doing so is here, and I love that we’ve all found a safe and healthy way to vent our frustrations.

  11. Jen says:

    This is such a brave column to read…Wow.

    I think that American culture, at least, places a premium on strength and good health. The former is okay—I mean, look at how the country was founded and settled!—but in recent years we have lost the respect for the elderly we used to have in the country, in part because of physical fallibility. It’s like once someone loses their youthful strength and smooth skin, what they’d done in the past no longer matters. How many of these old men in nursing homes are WWII or Korean War heroes, firefighters or police officers? How many of the women were nurses, how many cradled crying children, ran businesses and employed others, were the quiet strength behind a family?

    It’s also a bit undeniable that deep down, we’re afraid of that future we all face: old age, illness, being alone, being forgotten or abandoned. Who wants that? Nobody does! We’re social creatures who want to be liked and loved. Yet it seems everyone meets the same end.

    Good health is something that, no matter what “they” tell us, including the First Lady, bless her heart, we cannot entirely help: some people can eat as healthily as a person living in the Garden of Eden and work out daily and STILL gain weight or not be able to lose or have health issues. Good health is great, but it is not always attainable. Still it seems that “trying your hardest” doesn’t always seem to count in THAT respect.

    What makes it worse is that so many patients find their doctors dismissing concerns. When even the doctor doesn’t take your concerns seriously, why should one think anybody else will?

  12. RobynHahn says:

    Melissa–great post.

    I am a “glass half-full” person. I try as hard as I can to “forget” that I have an illness. Sometimes my best friend and I go out (she does not have thyroid disease, but does have another issue), and we decide on a “sickness moratorium”. No talking about anything remotely related to our problems. Of course, the beauty of our friendship is that when I need to be “half-empty” I can, with no weirdness or judgement.

    I HATE being sick, too. Even worse, as you alluded to, is being sick and NOT LOOKING SICK. Since my diagnosis almost a year ago, I’ve lost 25 pounds and counting. Sure, I went gluten free, but I still eat whenever I want, and if I want potato chips with cheese on them washed down with a Merlot I don’t hold back if I’ve had a bad day. I’ve dropped from 145/150 pounds to 120/125 pounds–a size 10 to a size 4 (which are now getting loose…). I’ve had to replace my work and athletic wardrobes twice.

    And as a result, I get the same comments all the time. “You look fantastic, what’s your secret?” I started out saying something like, “Well, you know, the usual things.” or “I cut out gluten.” Inside it would make me seethe. I’m chronically ill, damn it! I don’t feel “fantastic”!

    Finally, I decided to speak the truth. When I get that kind of comment I now say, “My secret? I have thyroid disease, it’s made me quite ill at times.” thinking that would shut up most people. Boy was I wrong–I have heard on MORE THAN ONE occasion: “Lucky you! I wish I could get ‘sick’ and lose weight”. WHAT THE FUCK DOES THAT MEAN? I don’t wish illness on anyone, but sometimes I wish they could walk that mile in my shoes and see how stupid and insensitive that kind of remark sounds.

    Add to this, I am an athlete. When my symptoms were at their worst, I couldn’t train physically. When my symptoms were bearable, I couldn’t train mentally. This spring I finally began to feel better enough to hit the training really hard, determined to be better than ever. I refuse to let this illness take my passion from me. But I hate that after competing, and despite overall “fitness” better than the average American, I have to sit down with my head between my knees for 10 minutes to not pass out. I hate that I have to temper my warm-ups based on how long I think I can last before pushing my body too far. I hate that I had to greatly reduce my cross-training, because I can’t risk losing time and energy away from my central skills.

    In a nutshell, I hate that my disease always comes first, even when I try to make it last.

  13. Hi Melissa,

    I always like your columns, but this one really was dma bomb! Sometimes it is really hard to start writing, but once I get there, I find that the words seem to flow, particularly when you are writing about a topic so close to your heart.

    My mother-in-law was by no means perfect. I think she herself would admit that she was sometimes a right royal bitch, but she sure loved her boys! She was desperately holding on to life, even though physically her body was breaking down. Gayle was one determined woman!

    We should never underestimate the importance of sharing our stories, our suffering and our pain. You are so right – we can learn from these, we can help others and we can also become stronger people.

    We’re off to Barcelona tomorrow, so I’d probably better get some more stuff done as we won’t be back until Monday night. Don’t know whether you saw, but I managed to get an interview with Dr. Teitelbaum MD who is quite a famous fibromyalgia, CFS and thyroid doctor who has also been on shows such as Dr Oz and Oprah. Thyrellas and thyfellas are welcome to submit any questions that they would like me to ask him.

    Have a wonderful weekend! I gave blood this morning and now I’m off to give blood again in a few hours. The joys of being sick!

    I also wanted to wish you lots of luck with your surgery with Dr hottie! We recently watched a Supernatural episode where the boys were trapped inside a TV series called Dr Sexy. Totally cracked me up.

    Love and hugs,

    Sarah

  14. Lolly says:

    Melissa,

    I love reading your column I know it comes from the heart.

    Good luck with your next suergery I wish I could carry your pain and your chronic illnesses away for you but I can’t want I can do is listen and read inbetween the lines.

    Sending healing vibes and Luv your way.

    Lolly

  15. Michelle says:

    Sometimes I don’t know if I am a sick friend or a well friend…of course it took me years to realize that I’d actually been super-close to death. I quaff a little pile of pills every morning – they’re for life – so my blood doesn’t stick to itself and kill me, so my moods don’t make me unbearable, and so I can pretend to have a thyroid.

  16. Lisa Stiers says:

    Melissa, thank you, you have a wonderful way of writting, I so know the feeling of being thrown away, of not being really loved enough because I have a disease that has turned on me. That has changed me. The stigma of this disease is overwhelming at times. You try to deal with this and try to figure out away to understand how and why you have changed! We all have to come to terms with it. I know I didn’t sign up for this and didn’t stand in the hashimotos line! No hands up in the air waving I’ll take it give it here. I didn’t even know this disease was on this planet until all most a year ago. I didn’t know there was more than one type of hashimotos until I found dear thyroid! Now I’m stuck with the fact I have it and I better learn about it and what it can do! It’s not normal thyroid and a pill isn’t just going to make you fine, nice fantasy but not reality! You have no idea where your body may turn on you next, you better know at least alittle better if you know more. Research and more research, question and more question and you know I found I’m not alone to the way it changed me, others have also had the same thing happen. It changes you in so many ways! Your family feel they lived with it, well yes they did but they didn’t live with the disease they live with the sysptoms and the aftermath of falling apart because of what it did to my body and me emotionaly! It took a person and turned her into someone I didn’t know. Now I’m to blame, well no I’m not it’s the disease and they are to mad to see it. The wonderful rollercoaster ride! They think I feel they are stupid that they can’t understand. They are not stupid they just can saperate what I did and figure it out it wasn’t me. I had no thyroid in my body for over two years and it takes a toll on you and it put me into a place I never want to go again. So now I live with the fact I have to know about this disease and make my decission on medical without my husband. Why because he won’t talk about it, he thinks I feel he is stupid, it’s not that at all, I just learned that this harmone control so much and if you are off balanced then you will change. Now the trick is getting everything back in line or as close as you can? Who knew this would cause confusion, memory problems, depression, let alone all the physical stuff. Body turning on you! I guess I always thought if someone has a illness or disease you don’t blame them you blame the illness always, they don’t have control on what it does to them. That would be like blame the patient for there parkinson which is an auto immune disease. Hello confusion,depression and thier body turning on them also or diabetes which if your sugar is off you get confusion, depression and so on and so on, the list is endless. Maybe it’s that they can’t deal with the fact they have to live it out with you, maybe it’s the fact that they are afraid you won’t be able to take care of them like you used too. Maybe it that they can’t face the fact it’s just in them to do. I don’t know, all I know is that I have to learn and be there to make medical decission alone because it’s just not talked about! I’m to afraid to bring it up anymore because I might insult there research abilities. It’s not that I’m calling anyone wrong at all. The research wasn’t complete enough, the sysmptons they believed I had wasn’t it and my doctor said give her time let the medicine work. He is the one that has been trianed in this field. He didn’t want me to be on anything that would mask or hurt me. He wanted me to have time to heal and to find if the course of treatment would do it’s job. It did! Still I need to find the courage to not feel so guilty that I took myself off of my thyroid and that I my have passed this gene down to my loved ones. Plus have compassion for those who have diseases it’s not there fault at all and they are not to blame. Good advice from my doctor. Like he says they take an oath first do no harm!

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