'Living with' Series · Chronic Illness · UCTD

Living with… UCTD

Today I am writing the third instalment of my ‘Living with…’ series, which details life with my five chronic conditions. You can read the first two instalments on Tourette Syndrome here and PCOS here.

So, life with UCTD. UCTD for those who have never heard of it, (I never had), stands for Undifferentiated Connective Tissue Disease. UCTD is normally diagnosed when a person has a number of specific symptoms and blood results related to autoimmune disease, but not all the symptoms to suggest a specific condition. Put simply you have the signs of autoimmune disease, without a full blown conclusion. Some people find their symptoms develop over time leading to a definitive condition, whilst others remain the same therefore never leaving that pre-diagnosis phase of illness.

When and how I got diagnosed.

UCTD is my most recent diagnosis and I have had officially had the condition now for around 6 months (longer if you count how long I have been unwell). I was diagnosed by a rheumatologist after displaying a number of symptoms which didn’t fit in with my Fibromyalgia or ME/CFS diagnoses, alongside a number of flagged up blood results. My consultant believes based on my symptoms and bloods, my UCTD is leaning towards Lupus.

The symptoms of UCTD differ from one person to another based on which condition they are linked with. For me, a lot of my symptoms were masked over and hidden by my other conditions and often explained away because of them. However, I knew in myself this wasn’t the whole picture and it was my blood results rather than my symptoms which finally paved the way for further investigation.

Living with… Series

What do I find different with UCTD?

The biggest difference between UCTD and my other conditions is this is the first condition I have ever had where I have received medication. With all my other conditions I was always told to self-manage and learn to live life with these limitations.

What I wish other people knew about the condition

As with the majority of my conditions, the most difficult thing about UCTD is the fact it is invisible and because it is invisible people don’t think it is real. On top of that UCTD tends to be an unknown condition, again making people become quite dismissive. I wish people understood the nature such conditions take on a persons body and realise that just because you don’t see see it doesn’t mean it isn’t happening.

The most difficult thing about living with UCTD

The most difficult thing about UCTD is the uncertainty of it all and whether this is going to be as bad as it gets, or whether I am going to get worse. Perhaps this has been somewhat determined in recent times because I had a telephone appointment with my specialist who said I needed to get my regular bloods done, and if all was well I would see him again in 12 months. However, I had a letter saying they would like to see me in the lupus clinic. It turned out my bloods were not great, and now 12 months has turned into 3 (although this has been extended due to covid). So, who knows what the future holds.

With all this said and done, if UCTD has taught me anything it is this: diagnoses are sometimes not always set in stone, symptoms can change, and I was right to trust my instincts all along.

xx

New instalments of the series are now available – click the condition to find out more: Fibromyalgia, M.E/CFS and Mental Health.

9 thoughts on “Living with… UCTD

  1. Great post on this as UCTD doesn’t get much airtime, at all. This is what I was diagnosed with a couple of years ago, with Raynaud’s as another subheading on the diagnosis list. I actually believe I’ve got Sjogrens as part of this, as does my doc, after recently realising I’ve mistaken a couple of symptoms, which was a biiiig mistake. Anyway, this diagnosis isn’t an easy one at all, nor is managing it or treating what can be an array of symptoms, and there’s definitely not enough awareness around it so well done for highlighting UCTD!

    Caz xx

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    1. Hi Caz – thank you so much for your comment! It is really nice to come across someone else who has had this diagnosis because there seems to be so little information or support anywhere! I had Raynaud’s mentioned to me also, but it is still a bit up in the air. I hope you get somewhere with the Sjogrens diagnosis – it seems like there are so many symptoms to these conditions it can be hard to pinpoint the specifics. Hopefully there will be more awareness for UCTD in the future to help everyone diagnosed.
      Thank you so much again!
      Sarah xx

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  2. So well-written. I also am living with UCTD and you explained it so well. I was so relieved to finally receive a diagnosis. Now, I have learned that UCTD is like an alphabet-soup label put on a medical condition that isn’t easily understood or treated. Thank you!

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    1. Hi Wendy – thank you so much for your comment! I agree UCTD is such a complex condition and there is such little information out there, that it is so tricky for ourselves and others to understand. I am so glad you enjoyed my post – thank you so much for taking the time to read it. Sarah x

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