It’s Okay to Talk About It

posted in: chronic illness | 8
Star Birth #2 @ 2014 Jane Waterman
Star Birth #2 @ 2014 Jane Waterman

In recent memory, as the saying goes, my experience has been higher than usual levels of chronic fatigue associated with my Sjogren’s. In the early years of my illness, I believed I successfully pushed through these times, and just disregarded the 3-hour naps aka crashes that would happen after a particularly intense day of cycling or circuit training. I was doing what I needed to do, which was act like nothing was wrong, even though my body screamed out at a cellular level that it was.

Since having to leave a steady freelancing job earlier in this year, I’ve had time to sit and reflect. Perhaps motivated by the learnings I absorbed while studying for my yoga teacher training, I turned to the books and began a comparative study of the wisdom from yoga traditions, Buddhism, CBT (cognitive behaviour therapies) and perhaps every wellness course I ever attended that came with good reference books.

Over the last weeks I’ve absorbed and integrated the message that suffering is a common mark of human existence, and yet even greater suffering is realized when we place the interpretation of our experience on the thoughts that flicker through our minds and attach significance to the judgements we form. This is what the Buddhist teacher Tara Brach calls, “Adding the second arrow.” We decide that we’re unloved or unlovable, that we’re alone or unimportant, or even lacking a fundamental goodness.

Drawing on all my readings, I’ve come to a place where I’ve been able to watch the weather systems of my thoughts pass by. I’ve tried not to cling to or push thoughts away, even the powerful ones that are related to the life-and-death struggles of at least one loved one, and the long-term welfare of another. I see thoughts that would cause heartbreak and anguish, and others that have in the past crippled me. And yet, do I feel some measure of success in not getting caught up in additional suffering? No.

I feel that in some ways I have reduced my feelings to shadow selves – the feelings that invariably arose when these thoughts came up – and I feel numb. I feel I’m somehow missing some elemental part of this practice.

As far as I can tell, I was born a sensitive child. Over the years, my family have met any threatened outbreak of tears or upset with a quickly reassuring, “Don’t cry,” “Don’t get upset.” “It’s all right.” And as I see another loved one labouring (and nearly drowning under that same legacy) I just want to scream and break out of this stoic fabrication, and stop pretending that life isn’t difficult. And yet I don’t know how to. Between the dryness of Sjogren’s, and the lack of use of my emotional muscles, my tears dry up before they begin.

Many years ago, a man named Bruce, whom I never met, but had the greatest respect for, assembled a website called “It’s Okay to Talk About It.” It was largely a selection of links to personal websites by people talking about their mental health challenges: depression, anxiety, personality disorders, PTSD, etc. In a way, that early collection of links validated what we were doing individually, and that was trying to find a way to talk ourselves out of the limited boxes our illnesses placed us in. The site disappeared a long time ago, but I took away the experience that expression really was a healthy way to deal with illness and trauma. A number of studies over the years, e.g. works by James Pennebaker, Louise de Salvo, and others, back this up. Julia over at Reasonably Well shared some newer studies in a recent post at https://reasonablywell-julia.blogspot.ca/2014/10/the-written-word-good-medicine-for-what.html.

The truth is I’ve been up all night after talking to a loved one who is so entrapped by the need to present as positive and thriving, that she is strangling the symptoms of PTSD and major depression and embracing the destructive path of substance abuse rather than risk talking about it.

Talking about it, whatever your “it” might be – physical, mental, emotional, spiritual – is so important and yet so frowned upon by familial and societal closed systems who believe that one sick member of the flock reflects negatively on the group. I’ve known at least three beautiful souls who have taken their own life rather than talk about it.

I understand the fear and danger of talking about it. There’s a fear that you will be drowned in shame and humiliation for being the one who spoke up. I remember such a case when I told my parents I was struggling with major depression and had to go on anti-depressants when I was 24. Mum insisted I see her GP for an extended session, and I could see the visible let down and dissapointment on her face when she asked for a summary of the session and I told her that the doctor said I needed to see a psychiatrist.

There’s also the danger of talking to the wrong people at critical moments in one’s health journey, where isolation and fear have you desperate to open up to someone else in the hope that you’re really not that crazy and you’re not alone. Sometimes it works, but sometimes you latch onto people you’ve unfortunately known only a moment, but are so desparate for a friendly ear that you spill out your history and realize the look of horror on their face only confirms the fear that you are crazy and alone.

However, then there’s the times when you struggle all night with it and decide you just have to write it out: to expunge the fear and yes, anger, from your heart that it’s happening again, to someone you love, and you can only hope she’ll follow up with the promise to see a psychologist and talk it out (and pray she’ll get one of the all-too-rare good ones). You hope she’ll follow up with you as she promised and you hope that she’ll find the strength that got lost after so many years of trying to navigate such intensely painful situations with only the help of bad medicine and substance abuse. Each time she raises herself a little, you hope, but there’s so much suffering piled in there, and to treat such intense suffering as something incidental as weather does a disservice, when you fear someone you love is going to drown in the resulting tsunami.

There’s only so much I can do, half a world away, and yet, I hope it’s enough. I hope she understands when I told her that I love her and can’t imagine a world without her in it.

I hope she’ll believe me when I say, as was said to me once so many years before, that it’s really okay to talk about it, and sometimes, having found the right audience, our story, although painful, will transform us.

Blessings,
Jane

8 Responses

  1. Vickie
    | Reply

    It is so very hard to find the right person to talk about your “it” with. I already feel like such a drain on my family, and I kind of sugar coat things with my friends. It is so nice to read your blog because I know “you get it” because you have lived it!

    • Jane Waterman
      | Reply

      Hi Vickie,

      I hear you. I spent too many years sharing with the wrong kinds of people and feeling worse as a result. By the time I found some genuinely compassionate and skilled counsellors, a lot of damage had been done. I find I no longer have the stomach to sugar coat things… I’d rather not talk about it then, I guess! It just feels false, so if people ask how I am and it’s not good, I’ll just say, “I’m okay,” and leave it at that.

      Like you, I’m really glad to have a community of amazing people to connect with online, as you know you don’t have to hide even the crappiest days – they really do “get it”!

      Take care,
      Jane

  2. Julie
    | Reply

    Thank you so much Jane for giving a voice for those who are unable. You a beautiful blessing in my life!

    • Jane Waterman
      | Reply

      Thank you, Sweetheart! As I feel blessed to have you! Hope to see you soon. Lots of love and big hugs! xxxx

  3. Victoria
    | Reply

    Stumbled across your blog when I Googled “seronegative Sjogren’s”. I am so sorry you’re going though this with doctors, and you are right about the “it’s age” comment regarding dry eyes/mouth – I was told that last month from a rheumatologist who actually became angry that my pcp had sent me to her, when all my tests (ANA and everything else except ESR) were negative. I am 58. Almost all my symptoms she dismissed as aging. Then she told me to go back to my pcp and get tested for cancer. So I can empathize with you. I hope you can find what you need medically before you get to my age. I am pretty sure, in my case, my illness will never be diagnosed.

    • Jane Waterman
      | Reply

      Hi Victoria,

      Thank you for writing and sharing your experiences with me. A lot of rheumatologists seem to have that prejudice, which seems crazy, when the Sjogren’s Syndrome Foundation says 70% are positive for SS-A and 40% for SS-B. That’s a lot of seronegative people! Ultimately, having a rheumatologist “believe me” after my first one retired has become less important. I can’t tolerate the current treatments, and so it seems better to just work at the things I can do: yoga, eating better, being in nature. The biggest one has been learning to be more compassionate to myself. This has surprisingly been the hardest thing for me, so I work at it as often as I can.

      Ultimately, you know your body best, so I think it’s important to learn everything you can, and explore whatever options you can, even if just with your PCP. And hopefully, they can get you another referral to someone who thinks a little outside the box.

      I’ve become used to being dismissed by doctors – the biggest thing is not to dismiss my own suffering.

      Blessings,
      Jane

  4. Therese Kay
    | Reply

    This is so beautifully expressed and so needed. It is OK to talk about “it”. So many people hide out of shame or fear. Thank you for your voice and your courage. I’ve shared one of your posts and plan to share this one as well. I hope you are able to keep up with your blog despite yoir challenges. Your voice is needed!

    • Jane Waterman
      | Reply

      Hi Therese,

      Thanks so much for taking the time to write to me – it always means so much to hear that my writing has had an impact. Thanks also for the encouragement to keep writing! Although chronic fatigue is a constant challenge, I keep working on trying to find the right balance to live, write and create. I’m hoping to do more of the latter two soon!

      Many blessings,
      Jane

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