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.
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.