UCTD - What's it like having your first flare?

I’d never heard the word ‘flare’ before my diagnosis. In fact, I don’t recall anyone medical refer to what I was going through as a ‘flare’ - but here I was, having my first experience of an autoimmune disease; when everything flared-up. I was mostly thinking about finding a solution and getting well, so I could be ‘Normal’ again. Plus it was summer - last thing I wanted was to be sick in summer.

Later, when I knew I had Undifferentiated Connective Tissue Disease, there it was - all over the Internet, in every corner - ‘having a flare’. Even then, I was preoccupied about getting out of my first flare; not even thinking about Flare 2, 3 or after that.

Let me just say - this is my experience and what we both may have in common is the same autoimmune disease, we won’t share identical symptoms. Sure, we can have the same broad symptoms, but your experience is yours. How the body reacts, the sensations, the thoughts - these will be different.

What’s it like - your first flare?

• Exhausting both brain and body;
• Needing to sleep - reminding me of having a bad flu;
• Wanting to sit down, as my ankles hurt;
• Swollen fingers that stayed pudgy all day;
• Eczema rashes, on my wrists, elbow, face;
• Knees and ankles making clicking noises I’d not heard before;
• Neuropathy - nerve sensations like pins and needles, or a pulling sensation running down my arm, and when its not there, numb fingers;
• Arthritis - swollen and hot joints - wrists, knees, ankles, fingers;
• Wondering when it would stop;
• Hoping it would just go away - miraculously, the day before I saw my first specialist;
• Worrying how this is affecting my partner;
• Worrying about impact on our relationship;

Mentally, I was frustrated, with two thoughts: ‘I am not very well’ and the alternative, ‘This is not Normal (for me)’.

How long does the first flare last?

Now the problem with the word flare is that it sounds like something that ‘flares up’ and just as quickly, goes away - but not that first flare (see my post on importance of time and UCTD). From the time of diagnosis, to when I had things under control and for all intents and purposes, stopped taking pain medication 24/7 was six long months.

When was my second flare?

I didn’t get much of a break between my first experience, and my next flare … A few weeks after things were under control, I flew to Australia … my second flare started on the first leg of a loooonnng flight.

You are not insane, UCTD is real - be mindfull, show grattitude towards yourself and living with UCTD will be easier.

Meet the author

Damien Saunders
An experienced management consultant and business leader interested in digital transformation, product centred design and scaled agile. If I'm not writing about living with UCTD (an autoimmune disease), I'm probably listening to music, reading a book or learning more about wine.
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