Spontaneity and Living with Lupus – By Terri

People living with lupus face daily challenges depending on the severity of their flares and, along with other contributing factors, in my experience, most “good” days, need to be planned in advance. 

Spontaneity is a rare and wonderful thing, something most people can take for granted, but something a lot of us don’t have the luxury of. Recently, a friend texted to ask if I wanted to meet up for coffee – had I been able, I’d have preferred a drink if I’m honest – but oh if only. I know a lot of you will relate, that teleporting, being magically dressed and caffeinated would be helpful in these situations, but sadly, this isn’t an option (hurry up, Science!). Showering is a feat, makeup and hair mostly optional but preferred, and travelling all equal exhaustion. So, I had to turn down the offer and found myself overthinking again. Was I wasting my life? What could be done? There are many things that attack my energy: anaemia, aching joints caused by lupus and the side effects of my treatment.

My Rheumatologist diagnosed reactive depression, and although I agree, I don’t believe I’ll ever accept that those carefree days are gone. I do get out, but it must be planned well in advance. Will there be seats? How am I getting home safely? (My eyes have been affected, causing my balance to be precarious.) Will I have the precious energy we all crave that day or night? My friends are great, but they don’t really understand that lupus is systematic for me. Cancelling plans has become the norm, and with it comes the fear I won’t be asked again. A friend of over 40 years is still hesitant to go anywhere alone with me, and that is something I cannot accept, which in turn leads to endless arguments. I feel like a liability, and this in turn causes me again to overthink, which leads to, in my case, almost despair. I virtually feel like a social recluse, and if I’m being honest, a general recluse.

Even the smallest things require planning, like a call from my daughter to ask if I would like to come out with my granddaughters and her. It takes almost the same amount of mental energy to determine if I am well enough, as it does the physical energy to get ready – by which time, I have of course missed the opportunity, which leads to the dreaded cycle of overthinking and a foreboding sense of failure. When I’m “well”, I feel invincible, and oh, the plans I make – I want to travel to the USA to visit my aunt and Godmother, whom I adore.  When the realisation hits with a flare or side effects of treatment, I feel like I’ve become the “failure” again.

We all try our best to live normal lives, but to feel isolated is understandable, part and parcel of the disease, I suppose. So, I recommend for anyone who feels like they are spiralling to read Lupus UK’s fact sheets, and/or contact them. I called the helpline when I was first diagnosed, confused and upset, well more accurately during the “grey area” stage, you know the “oh you’ve got a connective tissue disease, and while your Anti-dsDNA (anti-double-stranded DNA) antibodies are at 18, we still need to rule out the other oh (excuse the sarcasm) 200 odd connective tissue diseases first”. Then the bombshell, “BUT given anti-dsDNA presence is almost exclusive to lupus, it’s likely you have it”.  The advice and kindness I was shown by the lady who took my call from Lupus UK was immeasurably comforting, and I have never forgotten it. I’ve included the link below, although I’m sure most know where to find it:

https://lupusuk.org.uk/need-to-talk/

In my case, it took many years to accept my limited ability to drink apple martinis on whim at our favourite watering hole. But accept it I must, and after 12 years, I still struggle with this “new normal”. I try not to overthink, although I admit to varying degrees of success.

But I know I’m not alone, and this is just one of the reasons why being a member of Lupus UK is crucial to help keep us connected. It has personally helped me feel more supported, less isolated, and less (dare I admit it) depressed. There are ways to combat this. I have friends over which takes minimal effort on my part, they also understand if I need to go to bed – not that it stops them – but I love hearing the laughter coming from downstairs whenever this is the case, also having my family and friends up for a takeaway (always a takeaway, we have definitely not been blessed with culinary skills…)

For anybody this article resonates with, please remember you are not alone. There are many research studies which suggest that chronically ill patients are more likely to develop depression. You are not alone and there is support out there.