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Coping with the first year after diagnosis and tips for keeping track of symptoms

I'd love to know how those who have been living with lupus for a while made it through the first year(or more). Between all of the appointments, trying to keep track of everything, and attempting function "normally" I'm just exhausted.
Doing things like going for a walk for 10 minutes or even taking a my blood pressure are even things I don't feel like I have enough spoons left in my drawer to do.

I'm also wondering how people are able to get and stay in the habit of tracking their symptoms and health habits consistently. I'll do okay logging them in my journals for a while then something happens to throw me off track and for a while I just can't even. Does anyone else have this problem and if so how do you deal with it?

  1. ,
    I do hope others will chime in with their personal experiences.
    In the meantime, I thought I'd share this article from one of our patient leaders on dealing with the challenges of a recent diagnosis: https://lupus.net/living/after-diagnosis
    Sending you all my best, Doreen (Team Member)

    1. HI, !


      I know managing life with a chronic condition can be challenging. I don't know if you're open to technology, but things like Apple watches can do a lot of tracking for you. I personally don't wear any watches, let alone an Apple watch, but my husband really likes his. Also, there are some pretty good online apps that make it easy to track your food, exercise, and mood each day. I'll be honest; I am pretty bad at consistently tracking those types of things on paper. Like you, I start off kind of strong and then get off track pretty quickly.


      Also, I wanted to share a piece from one of our contributors about her first five years of living with Lupus -- https://lupus.net/living/diagnosis-anniversary. I hope this information is helpful for you and I also hope you get some helpful feedback from other community members.


      Best, Erin, Lupus.net Team member.

      1. I have to tell you my first year is a blur. I was so sick and just trying to survive and get past each moment. I do remember meditating a whole lot and deep breathing to try and just calm my nerves of it all. Once I was stabilized, I really just took it one moment at a time. I had to give myself some grace because I was hard on myself and that proved to create more stress in me.

        As far as symptom tracking and journaling. Yep, I start, stop and start again. It's a process that I've had to just take step by step. I have done journaling challenges to keep myself consistent and develop the habit. Finally, I just had to once again give myself some grace. It's hard to adapt to change in our body, mind and spirit when diagnosed. We become so hard on ourselves and that longing to be who we used to can cause us stress. Finding coping skills can be hard but it is doable in little spurts. I hope that helps a little. ~Racquel~ lupus.net team member


        1. Thank you so much for your input. 💙

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