What Would You Say?

CBC Wire Tap‘s bittersweet video compilation of life’s lessons stirred me to pose this question to all of you: What would you say to yourself at different points of your lupus journey? At diagnosis? After one year? On your last hospital visit?

As most of you know, my most powerful lupus lessons were learned almost exactly six years ago, during my last major flare. This month, my lupus cerebritis anniversary passed unnoticed until a friend mentioned it days after the fact. The shock of not remembering was quickly replaced  with elation. Memory has had too much power over me the last few years. To feel its grip loosening in this way is what I’ve been waiting and hoping for.

Thanks, brain! This is the best anniversary gift you’ve ever given me! 

That being said, I don’t think I should let six hospitalization-free years pass by without some kind of recognition! The video inspired me to come up with my “How to Age Gracefully with Lupus” words of wisdom for the Elena of six years ago. The perfect way to mark this milestone!

Dear 28 year old,

Don’t panic. Take it minute by minute if you have to. No matter how dark and full of pain your life feels, seek out gratitude – it will anchor you, it will keep you fighting. When in doubt, NAP. Saying no will give you more yeses. Seriously, you need to trust me on this one. And most importantly, there are people out there who do understand. FIND THEM.

Love, 34 year old.


One more message, before I go:

Dear YOU (yes, you!),

So glad we found each other.


p.s. Leave me a comment with your words of wisdom to your past selves – I’d love to hear them!

5 thoughts on “What Would You Say?

  1. As I sit here in my hospital bed, I couldnt help but cry when I read your letter from you to you, because I should apply those words to myself. Im 32 and push so hard at life to reach goals and be happy ans “normal” and then this happens so its like I go ten steps further and 5 steps back. Im lucky enough to be engaged to a wonderful man who is always saying to take it slow and REST… I feel like I dont want to fail anybody…


    • Hi, Coralimar. I totally understand how you feel. I didn’t want to fail anyone either and so I did too much, which resulted in eight years in and out of the hospital. Everyone is different, but for me, the moment I started to do less, I actually accomplished more. Listen to your fiancé and be gentle with yourself. Remember, none of those goals you have for yourself can happen if you’re not healthy enough to pursue them. Take care of your current moment for now and worry about the rest later. :) Sending you gentle hugs and wishes for a quick recovery. I’m happy that you came by the site. Hope to be chatting with you more in the future!


  2. I don’t really know what to say before I had lupus my life was good as I remember it I not many people understand no one in my family has even read up on it I feel like my body is falling apart my hair was falling out I broke my ankle six years ago and walked around on it until finally I had surgery a steel plate put in ,I am in pain daily ,I have Sjögren’s syndrome ,I have para thyroid problems ,my weight goes up and down like a yo yo ,I have fibromyalgia and I had a heart attack last dec and no one to talk to . I don’t feel sorry for myself I just feel like I am going crazy .i can no longer work and I find it very difficult to be positive .when I go to a walk in clinic I feel like I should where a crucifix the docs treat you like you have leporsy and don’t listen to a word you say being labelled has not proved beneficial to me .i feel guilty when I am to sick to get out of bed I could go on and on .i guess I have said too much already I do the best I can but it never seems to be enough thank you for your hugs I guess you can tell I’m pretty lonely and I have been married for 35 years . I think he stays with me because he is worried about what people will say if he leaves.i have thought of suicide but then I think of my kids and grandchildren .sometimes I just can’t cope



    • Hi, Sharon. I am so sorry to hear that you are in so much pain emotionally and physically. Have you thought about talking to a counsellor or tapping into the resources at your local mental health or lupus organization? I saw a psychiatrist during my last flare and it really helped to have a neutral voice giving me perspective on my circumstances. If that’s not an option, have you checked out some of the lupus forums online? There’s a new site called mylupusteam.com where you can connect with others and even find people who live in your area for support. My favourite Facebook group is Hot Chicks with Lupus – it’s a great place to post specific questions to fellow lupies. All topics are covered, ranging from medication, relationship troubles as a result of lupus, symptom queries, and more! You can check out my “links” page for more sites and blogs to check out. Also, take some time to think about your interests, past and present, and how you can create some positive “me” time in your everyday. You may not be able to do some of the things you used to do, but maybe you still do smaller aspects of it or find new hobbies/interests to explore. It could just be 15 mins (or even less) to start. It could be as simple as a few pages of really great book (or an audio book), a relaxing epsom salt foot soak, taking a few artsy photographs, or listening to your favourite singer/band by candlelight. It’s so easy to forget that we are not our illness or our circumstance. Rediscover all the little things that make you the unique and awesome person you are! It is so great that you have your children and your grandchildren in your life. Hold onto that joy that they bring you and remember that as alone as you may feel, you aren’t. There are so many people out there who are feeling the same as you. In times like these, words simply aren’t sufficient… just know that I am sending you healing and positive vibes to where you are.


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