It's okay not to be okay: How I deal with my lupus anniversary

Anniversaries of significant events or the death of a loved one leads to that date forever marked in your brain. Each year that passes me become a little easier, but its still a date you don't forget. I think with chronic illness it is much the same. Some of us were born with conditions and only know of other norm's due to those around them. Or like many of us we lived unknowingly with conditions or developed new ones. It's in this situation that many of us talk about the grief process of our pre-sick lives and who we were before. A lot of us also say we wouldn't change having our illnesses as they made us who we are today, which I don't disagree with in some sense - Actively Autoimmune would not exist! But of course there is still a part of me that wished that this whole episode never started on 11th April 2017.

Same pose, different hospital gown, different years. (Photo above)

I think what I often find most difficult is the fact it wasn't one single event, and then I recover. I know recovery itself can be an up and down process, but the general direction is that you improve. With autoimmune conditions or EDS, POT's etc we get single events, but repeated, or we never go back to our baselines, or we just start to improve and then something else strikes or goes wrong. It means I can't say a year on that 'I am getting better' and I find that hard still.

It's the feeling that after a year it is time to take a step back and reflect on where we are and compare that to others. A year feels like a substantial amount of time of your life, a whole year older. You want to have strived for milestones, achieved things, progressed. If I compared my day today with my day this time last year, they would almost be identical and accepting that has been hard.

I haven't found a magic way to handle anniversaries, except to be kind to myself. I know I feel down and I know why, and sometimes thats okay just to let myself feel that. I know I will pick myself up again and stop focusing on the bigger picture and instead focus on my day to day wins and see where that takes me instead. I'll try to not compare to where I thought I would be this time last year or compare to where I want to be or compare to my peers around me as comparison isn't helpful.

Chronic illness is both repetitive and unpredictable. Viruses hit us despite being the most efficient hand washers and mask wearers, flares strike us for being in the sun for 5 minutes without protection and fatigue just hits 24/7. We can hope that one year we will be in remission and can say 'wow remember this time last year sucked' but until then let's focus on getting through each day with a chronic illness.

Lots of love, Zoe xx

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