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Chronic Snarkopolist: The Ugly Parts of Illness

Post Published: 10 February 2011
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 3 responses. Leave a comment

Hello my loves!

Every so often I get this feeling, I will describe the scenarios to you so you can hear me. It is almost always the same type of situation and the same feeling. Once when I was helping an improv buddy dye his daughter’s hair purple striped I felt a longing in my heart – “Why- why isn’t this my life? My child? My every day?”  I never named it because I didn’t care to ruin my joy in that moment but I FELT IT.

And I did what one therapist calls, “have a cup of tea with it.”  The same feelings arose in me w hen I was knitting with some friends and they were talking about their three (each) adopted children and how big their family has gotten and how they are building their new home to keep their life contained.  And I saw the clothes and hats and JOY they knitted for their children.  And a pang of longing for such things rose in me.  I was happy for them. And like any good friend I knit for each child my friends have and I celebrate with love and joy new arrivals, adopted or biological.

Yet- I feel this same longing, this pang when I see seemingly healthy people walking down the street and I watch them work out at gyms, running on the treadmills.  And YES I realize that many of our illnesses are QUITE invisible. And I do NOT know their stories.  Yet I long for my health.  I long for the day when I am no longer getting new diagnoses.  I long for ONE month when I’m no longer having repeated PET scans or giving myself sub cutaneous injections to keep tumors from growing larger and causing my organs to grow too large and give me heart attacks.

I long for the day when I don’t have several month long infections in my body.  I long for the day when complex RARE diseases don’t sound NORMAL to me.  And I long for the day when I am not horrifyingly envious of my friends who actually go into remission and hit “survivor” status. Because they can walk away from their disease and leave it as a memory whilst the rest of us must walk on with our illnesses and hear a constant barrage of new and re-diagnoses.

This sounds preposterous, this confession.  I want to be better than this.  I want to be sitting on a mountain, above the fray- balancing on a pin – sucking in all the negative shit life gives us and blowing out little puffs of wisdom.  I don’t like being all human and vulnerable and dealing with everything life hands us.  I don’t like reading about my life in a text book and realizing that no matter HOW healthy I treat myself sometimes life hands me some shit I didn’t ask for and I get what I get.  And worse is the JUDGEMENT from others that if only I took better CARE of my health my genetic code might not be so jacked.  And I’m grateful I LOOK healthy if only because I can occasionally pass as normal.

I hate trying to constantly come up with meaningful thoughts when sometimes I feel desperate and sad and alone.  Being kind and gentle with people feels right and talking and sharing feels lovely.  But sometimes – absolutely NOTHING feels OK.

One recent widow has a lovely blog with lots of wisdom and beauty.  And I reach out to her and thank her for her sharing words.  And she admitted that she cries alone a great deal too.  And that sucker punched me.  Why? Why doesn’t that rawness ever get recorded?  Why doesn’t she ever record that?  Why only the beautiful parts of the loss?  Why can’t we be expected to see all the parts of her loss?  Same as illness – there isn’t all sweetness and evolved ideas here- sometimes there is sheer anger and frustration until we work it out and spit out the bones.  And we’re all processing it together.  We’re all healing and sharing together.  Why can’t we share all of it?  What’s wrong with the ugly, painful, and hurting parts of our journey? Isn’t it here for us too? Aren’t we all navigating it, hopefully together and in solidarity?

I’ll be back same time next week! Kiss kiss!

-Melissa

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3 Responses to “Chronic Snarkopolist: The Ugly Parts of Illness”

  1. Amanda says:

    Melissa,
    I too hate that desperate feeling that having a chronic disease brings. Sure I get through everyday, doing my best “normal” routine… but some days it just takes everything in my soul to do this. I long for my old self, who could and would go non-stop. I cry for the old me, I miss her terribly. There are days on end where I want to be that crazy lady who says exactly what she feels every minute of the day… that “i am mad at the world, mad at the cards i have been dealt, pissed off at everything”. I wonder if doing that would help me to feel better on those days? At least it would keep people away from me.

    It is easy for others to say “don’t wallow in self pity” or “snap outta it”. But I feel we are allowed to feel those feelings, try to understand them and someday… come to terms.

    For now I am still pissed off.

    🙂

    Amanda

  2. Anne says:

    I have hypothyroidism and rheumatoid arthritis and I can’t change that, all I can do is try to eat healthy and do whatever I need to do to not be in too much pain. I can say that I feel so blessed and I am grateful every day . I wish I had the gift to write and express myself the way Melissa does and like Amanda I wish I could do all the things I once did but I can’t,and some days I forget that. I know there are people that are worse off than I and I am lucky. I refuse to be angry because that makes things worse and I don’t feel angry. I am happy!

  3. Gina says:

    I have not cried in a long time. I cried after reading what you wrote. Authentic. Beautiful. Thank you.

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