Checking In

Posted on by jenthegirlonfire

A dear past work colleague of mine died in the last week. And its’ deeply saddened and shocked me. I had an incredible fondness for her, as for me, she was the epitome of life-vibrant and quirky and also protective of me in a maternal sort of way. (Remembering that I was only 23 when I started that job). I left that role seven years ago, but as I haven’t been capable of returning to the career I trained for and working in that department constituted nearly half of my working life, it feels like I only recently left that job and those people behind. We had kept in contact virtually, sending messages back and forth, remarking on each other’s Facebook posts and before I received the news her conditional was terminal about a month ago, I had incorrectly assumed from her past messages that the treatment was working and all would be well. I wish I had checked in more and asked more questions now. She was intensely private about her state of health even to the end, so maybe it wouldn’t have made a difference. But now I just won’t know.

Some of you may think I’m being hard on myself. I know we can’t be all things to all the people in our lives. But being sick, whether its terminal, non-terminal, acute or chronic, can be a very lonely time. I learnt this the hard way at the tender age of 32, when faced with this incredible challenge, a number of people I thought would be there to support me, were noticeably absent. I was intensely sad and bitter. I say this not to lay blame at anyone’s door, but it is usually much easier to be present for the good times, than the bad. Why is that? Maybe we are scared to say the wrong thing (and believe me I have received some really insensitive comments at times of trauma in my life), or maybe we are simply so busy and absorbed in our daily lives to have the space to take on someone else’s troubles. Sometimes our cup is simply too full. Sometimes we are also struggling with big issues in our lives-be that the break down of a relationship, physical and mental health issues or uncertainty around work or money. I have also been guilty of this at times, especially in the early years after the onset of my symptoms. It was not until my condition stabilised (well, as stable as it could become), that I felt I could adequately support others through their tough times. And I never wanted others to feel the way that I did during those dark, dark times. Hence why I berate myself now.

The tricky thing is, that often people with chronic illness hide how they are feeling from others. With no externally visible symptoms, how are we to know how they are feeling? We sometimes put on the equivalent of the telephone voice, that is all social pleasantness and politeness (here I am imagining my mum as I viewed her as a kid-with an 80’s perm and block colour clothing, talking down the end of our landline phone-“oh helllllooooooo Mrs Brown. How lovvvvvvvvelllyyyy to hear from you!”). We sometimes want to avoid the possible judgement we have previously experienced, insensitive remarks (such as “it’s all in your head”-a classic-or lose weight) or simply because that’s what polite western society expects of us. As a society, we understand the gravity of potentially terminal illnesses, such as cancer, but with chronic conditions, like fibromyalgia, lupus, polymyalgia and so forth, which are considered non-terminal, sometimes outwardly non-visible and with a lack of publicly disseminated information, we sometimes underestimate what the sufferer is going through. Some might say that these conditions are not fatal. I disagree. The toll that these conditions can take on my and my peers mental health can be immense. There were many times earlier on in this pain journey, that I envisaged taking my own life, overwhelmed with the pain, grief for the life I had lost and despair that I could never be the mum and wife to Miss Five and Hubby that I had always imagined I would be. I came close once to making it happen.

Some people have said to me I’m brave for opening up the way I am. I am able to do that because I am not in that headspace anymore. Some of this is now the story of my past and I am a different person than I was five years ago. And it gives me comfort to think that my story and these posts might help others in a similar situation that I was in five years ago. I still wobble mentally every now and then and I am not always a Positive Polly. I get frustrated and I swear that I was given the “faulty body.” But, I now have incredible friends and family around me who have learnt or are learning how to better support me. Like those with depression, I believe that there are [rarely] no signs that someone is struggling. It’s sometimes in the choice of words, the space around those words, their absence at social gatherings and so forth, that we see little clues. And we can only really start to understand that person’s clues, by checking in with them and listening. I have a friend that I have grown close to only in the last few years, though I have known her nearly fifteen years. We text multiple times a day, initially about our kids, our domestic workload, but over time, our communications have become more and more candid. There is very little we don’t discuss now. I think I know more about her than her husband! And in that time, she has noticed that my “tell” that I’m not doing well is that I don’t reply to messages and become withdrawn. Sometimes I am just simply busy and can’t find the time. Other times I am unwell. She will text me with a simple “hon, are you doing ok?” And the gratitude I feel for that person is immense. She has listened and understood me and checked in.

So, if you have the space in your life, check in with your loved ones, including those with chronic illnesses. Think of it as a more regular R U OK Day……

Thanks for reading. Feel free to comment below. Catch you on the next post.

xx Jen-The Girl on Fire.