We Are At The Beginning Of Change…
Thursday December 8th 2016

Archives

Chronic Snarkopolist: Cycles of Illness – Here and Gone Again (and Again)

Post Published: 07 February 2012
Author:
Category: Chronic Autoimmune Conditions, Chronic Snarkopolist, Column
This post currently has 12 responses. Leave a comment

Hello my loves!

I have taken time off and missed you very much. I have been sick and needed to pull myself together. And then I was afraid to write. Mostly because I didn’t know what to say anymore.

Then I realized that you would understand. And so I writing to you now. I am writing because sometimes I think we forget who we are and what to say and so we bring ourselves to the world as a blank. I have been blank and paralyzed and afraid for a few weeks. But I am back now. How I hate these moments. I HATE THEM. I hate being sick and I hate when I have to take time to remember who I am. I hate that this will be my reality for the rest of my life. I will always have to spend more time dealing with life issues than most people my age.

I am also humbled and grateful for the friendships that sustain me. I have people helping me drive out of state for my six month doctors appointments. Someone who I am getting to know but who hasn’t known me long said, “You’re young and healthy, you don’t need help driving that far.” And I realized that no matter how sick I feel or how much I am hurting I have learned to hide it well. We all have. We don’t complain or talk about it so we don’t “bore people to tears.” Therefore no one KNOWS we need help with things most people wouldn’t need help with. Like driving long distances. I felt naked in that moment, vulnerable, ridiculous even – for having needs that some people wouldn’t. But I said, “Yes, sometimes I need help driving.”

I didn’t explain further. I didn’t say how many friends I’ve lost or how many I’ve never made or how difficult I feel when I cannot focus or concentrate or when my brain swells from a lupus flare and that dealing with lupus is part of my reality that I hide. Not because I am ashamed but because there are no words to bring it up in normal people conversations. Not for thyroid issues. Or any autoimmunities or cancers so many of us silently deal with. Or when we speak about them we seem like we are complaining or sullied. I didn’t say how many thousands of dollars I’ve spent on healthcare or how illness has shatter my life again and again and how I’ve spent more of my life picking up the pieces of my career or my relationships than I have on taking care of ME.  I didn’t mention what I go through to get up out of bed or eat, or live my life each day.  I didn’t explain that I’m terrified of being loved because I’m afraid that if I let people love me I will NEED them and in needing them I will become so vulnerable they will resent me for not being the person they thought I was. I didn’t say that I hate being abandoned for dealing with a chronic illness. I didn’t say how grateful I am when people like me anyway. Now I didn’t say how I’ve come to believe that we all damaged – healthy and sick alike- but many sick people I know have had to emotionally bear the burdens of being blamed for what is not our fault. And the healthy people often seem smug in their good health. And I say nothing. I say nothing because I don’t know what to say. I didn’t even know what to say to you when I’ve been gone so long and you get it.

It is enough I suppose, to come back and test the ground I love.  The worst part of being chronically ill for me is indeed the unwanted coming and going. Life seems to continue for everyone else but for me it stops until I am OK enough to carry on. And people forget about me. Or they drop me from activities I really loved and needed.  So many people don’t know how much I depend on them and my social outlets to see myself as “normal” and “able.” Mostly because they cannot fathom a life where so much depends on so little a thing as simply laughing that day.  And I never know if saying, “Hold space for me,” is better or safer than simply finding new activities when I can come back enough.  I have decided that people are not cruel so much as blind, unwitting, and unable to fathom.

Again and again this cycle happens – in short doses – rest, better, rest better. Hospitals and health.  And so we grab life when we can, and handle the less pleasant when we cannot. Cycles. Cycles of chronic illness. Living life. Playing the cards we are dealt. Understanding that some people don’t want to deal with it or cannot or will not fathom it.  Trying not to take it personally, though it hurts. Not knowing how or when to discuss it with friends who are getting to know me. Losing friends to it no matter what – because I am gone too long and life changes, or because I cannot do the things I WANT to do or because people are afraid of being involved with me, or maybe because I seem unreliable, annoying and difficult during my less pleasant phases. Who knows? Living life when I can. Living it as fully as I know how when I am able. I have lived like this and yet I am still looking for navigation strategies. I suppose we all are.

Does this happen to you? How on earth do you handle it? Have you found enough social support and understanding to be able to come and go with relapsing and remitting chronic illness or do you simply just make new space for yourself when you can?  Do you get braver as time goes on?  Does it hurt or have you learned not to take it personally? Do you have any navigation strategies? Which ones?  Is there such a thing? Do you try to make it easier for people around you? How?  Does the cycle of coming and going ever get to you? How do you handle it? What do you think? What do you do? Please tell me! I must know.

I will see you in two weeks! Kiss kiss!

-Melissa

Be Sociable, Share!

Follow Dear Thyroid on Twitter/@DearThyroid | See our Facebook Page | Become a Fan on Facebook | Join our Facebook Group

You Can Create a Dear Thyroid Profile and share with friends!

Reader Feedback

12 Responses to “Chronic Snarkopolist: Cycles of Illness – Here and Gone Again (and Again)”

  1. Kathi says:

    Dear One, I do so understand. My nemesis for 3 years now has been cancer-related chronic fatigue. ‘But you don’t LOOK sick…’ GAAAA!

    Grab it when you can. We’ll be here. xoxo

    • Melissa Travis says:

      Dearest Kathi –
      chronic fatigue can suck my big left toe. I’m sorry you’re dealing it. Thank you for your love!
      xo
      Melissa

  2. Melissa Travis says:

    Dearest Kathi –
    chronic fatigue can suck my big left toe. I’m sorry you’re dealing it. Thank you for your love!
    xo
    Melissa

  3. Gwenny says:

    I want to hug you in a blanket of love and comfort and make all the bad stuff disappear. You are too great a person (with a brilliant, brilliant evil genius mind) to suffer such nonsense like lupus and whatnots. As long as you keep writing, returning from the blank or otherwise, we will be reading!

    • Melissa Travis says:

      Awww Gwenny-
      you are too sweet. I’m grateful for your loving generosity. Thank you for the loving comment and for existing in the world.
      xo
      Melissa

  4. Julia says:

    Thank you for sharing something so personal. You voiced exactly how I feel. I don’t know how to handle these episodes and I don’t have any advice. I can offer that I recently had a terrible time dealing with being unable to work and seriously worried about how I will support myself. I am used to keeping these feelings inside because of the reasons you listed in your post. I crashed and burned, broke down crying and talked to a friend. She called some of my other friends and they helped find a solution. I feel loved. It was scary to open up too much though. I am glad I did. Hang in there everyone.

    • Melissa Travis says:

      Dearest Julia,
      Thank you so much for your comment. I’m so sorry you went through a hard time with work and supporting yourself through illness. Thank you for being vulnerable and sharing such a beautiful story about going through a bad time but still feeling loved. I’m SO glad you thought to call your friend! I’m also SOOO glad she came through for you and came up with a solution with your other friends. It is scary and powerful to share with the people we love (and need).
      Much love!
      Melissa

  5. Fay says:

    Dear Melissa,

    You have made me weep with relief, grief,joy – all at the same time. You have expressed yourself so eloquently. I relate to you completely. Know that you are loved. For all the friends that we have lost along the way, let them go, it’s not their fault that they do not understand. And for the friends that have hung around,well, they are the best, so they are all that we need.

    • Melissa Travis says:

      Dear Fay,
      Thank you for your beautiful comment. Thank you for sharing such a powerful emotion – that you have also felt such similar feelings. Here is to all the friends we have lost along the way. And here is to the beautiful people who have stuck around. Thank you for spending time to recognizing this with us today. I needed it especially. These are losses but they are also powerful gains.
      Your words were important to me today. And necessary. Thank you.
      xoxo
      Melissa

  6. Lisa Byrne says:

    um…why, yes to all of this! 🙂 23+ yrs of chronic illness symptoms. It gets easier in many ways & every day still hurts. I’ve given up explaining to anyone-xcept those closest. Sometimes there are weeks/months/years where things go unexpectedly to hell-but I’ve recently found even these times are not without tremendous insight. (i.e. this last year led me to you darling!) I really try to focus on the positive. Sometimes I fail. No matter what tho, from now on, I will hold space for you Melissa. Thank you for your exquisite writing, and your profound sensitivity. Your authenticity & willingness to show up again & again is so encouraging to so many. Be well & have a safe, healing journey! xoxo
    Lisa B

  7. Lolly says:

    Aww Melly Mel…I feel like I abandoned you too.. I don’t always reply not alwys knowing what to say and sometimes I have to take myself off to another place for my own sanity…When I think of all you have to endure don’t you ever stop writing.. because I love to read what you have to say and most of all I love you for who you are and how honest you are about your feelings and your health. I wish i could be as upfront..Happy birthday too sexy.

    Lollyxoxoxox

  8. Katlin says:

    This is a beautiful post and although I am sorry you struggle with this it is nice to know I am not alone. I am very good at putting on a face for others, which is why no one takes how sick and tired I feel seriously. I don’t want to be the one whining, and its really hard to find support from people who do not really understand how an autoimmune disease can make you feel. Even my family, as well as close friends, plays the oh you look fine so you must be fine card. Thank god I have a boyfriend that is as supportive as he is. Thank you for your post and for opening up so much <3. I've been feeling very alone and this post helped to relieve that feeling.

    Katlin.

Leave a Reply

Comments are moderated in an effort to control spam. If you have a previously approved Comment, this one should go right through. Thanks for your patience!