The story of Sarah Golland
Undifferentiated Connective Tissue disease – my experience so far.
I wrote this a year ago in January 2021 and thought that it would be fitting to share this on Rare Disease day. I didn’t publish it at the time because it felt too self indulgent, but with the benefit of a years experience I am going to allow myself that indulgence. Hopefully by publishing it now it will help raise awareness. NB this is not a pity party!
January 2021
My 2020 was suboptimal in a myriad of ways, one of those we can all relate to, the global pandemic, which is still now in 2021 taking its toll and at the time of writing in the UK is at its most awful trajectory. When I think of those who are currently on the front line saving lives in our hospitals, burnt out and traumatised; or those who have lost friends, family, jobs, businesses, incomes, education, the chance of one hot meal a day I am reminded to have a sense of perspective.
This has been a terrible year for everyone.
This was also the year in which I was diagnosed with UCTD (more on that later) which for me above all else has led to my suboptimal year.
Writing about this feels a bit like I am ‘coming out’. I haven’t broadcasted what has been going on with me, because let’s face it nobody has really needed more bad news in their life. It’s also been so all consuming that to be quite honest I get a bit sick of talking about it, and I really, really don’t want to be defined by this. I want to be the old Sarah, not this suboptimal version. No pity please.
So why am I writing this now?
Well firstly I think it might be cathartic to get it down on paper, I am not sure this will even be for public consumption.
Secondly I think that had all the dots been joined sooner that my diagnosis would have come sooner and in a less dramatic/traumatic fashion, if this can in any way help anyone else join the dots then that would be a good thing.
Thirdly I want to thank my nearest and dearest who have blown me away with their support, a level of support I couldn’t have possibly imagined I would ever need. They have been so generous with their time, energy, and compassion. They have brought me food and medicines, looked after my children when I haven’t been able to, encouraged me when I was down, shown me love and affection and supported me through the biggest amount of absence from work ever (I was unable to work for over 80 days last year).
I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD) in August 2020, it sounds like a bit of a non thing doesn’t it? It is a disease in its own right, but is also sometimes a stepping stone to being diagnosed with Lupus (SLE) or Rheumatoid Arthritis. My path is looking more like Lupus. It’s an autoimmune disease, I already had other autoimmune conditions (hypothyroditis and lichen sclerosus). It also seems likely that I now have Raynauds and Sjögren’s syndrome, two other autoimmune conditions that often accompany UCTD or Lupus. Next time I see my GP I am half expecting her to shout BINGO as she waves her autoimmune disease bingo card at me.
So how did I get diagnosed? It is as you might expect, to coin a reality TV phrase I loathe, a ‘journey’….
My underactive thyroid was very unusually diagnosed at 14. I had terrible trouble with my knees when I was worried as a child but that got better as I got older, although never totally went away. I have always been prone to catching colds and viruses very easily and being knocked out by them. I have had odd joint pain from time to time but never anything bad enough to investigate (apart from the knees).
However in the last 10 years I noticed that my absence levels from work were far from ideal, usually a minimum of 10 days a year, which working in HR (as I do) is usually a trigger point to have a conversation about absence levels. But as I was inevitably the person that has those conversations when it came up on a report I would have a conversation with myself that went:
Me: so your sickness absence is crap again,
Me: yes I know but its genuine, I just don’t understand why I get every bug going and why it takes me so long to recover, they just wipe me out
Me: Some of its muscular skeletal …
Me: Oh yes, I do have problems with my back, shoulders, feet, knees….
Me: Are you sure this is all genuine? Are you just over egging it?
Me: I don’t think so….(starts to worry about hypochondria)
Me: Ok well try to be better, more healthy eating and exercise and just try to get back to work sooner..
Me: OK
This pattern just got worse over time and by 2019 my sickness absence was 22 days, I was having all sorts of body fails, from planta fibroma (lumps on my feet causing pain) to suboptimal kidney function (which thankfully sorted its-self out). I was having random joint pain in both joints, so both elbows, both hips. I was repeatedly catching colds and viruses and it was taking me longer to get better and I was having periods after them where I was so very tired. I would have a cold and the symptoms would be gone in 2 days but then I would be so tired I struggled to get off the sofa for another 3. I also weirdly didn’t want anyone to know about the tiredness because it didn’t feel like I was genuinely poorly and I was worried that people would think I was making it up.
In December 2019 a pretty switched on GP suggested I get tested for Lupus (I have discovered subsequently that this was a lucky strike, there are not many GP’s that recommend this). I tested positive for ANA and anti-dsDNA both indicators of Lupus or a Lupus like disease. Unfortunately due to a cock up at the surgery the results were not picked up, I was not informed.
Fast forward to March 13th 2020 a global pandemic arrived and I got ill, really ill. It started with what felt like a cold, I got a permanent fever, all my joints hurt, my kidneys burned, I had a muscle weakness in my arms that meant I couldn’t lift a full pint of water, I suffered periods where I had shortness of breath, but the worst thing was the tiredness it was overwhelming all I wanted to do was sleep or lie on the sofa. My brain was confused and foggy. I had little clarity of thought. This went on for a month. These were dark times, I couldn’t look after my children so they went to stay at their Dads full time (we normally co-parent 50/50).
I could barely look after myself. For the first few weeks the GP’s naturally thought I had Coronavirus but of course there was no testing available then. I still don’t know if I did have it and that’s what triggered such a severe response.
After 3 weeks and me researching my symptoms I asked the GP (on a phone call) again about Lupus, explaining that I had had a test previously and wondering if I should have another test. When she looked back at the test result I can remember the pause, hearing her take a deep breath and then the incredulity and horror in her voice over the phone, when she said “but you tested positive”. I cried, uncontrollable sobbing, mostly out of relief that there was a possible solution but also out of sheer frustration that this month of hell might have been prevented.
On the 14th April I had a telephone consultation with a consultant Rheumatologist who prescribed Hydroxychloroquine (yes, the Trump drug ) and he indicated he thought it was a Lupus like disease. He recommended I take naproxen (an anti inflammatory) when the joint pain was too bad. My fever stopped within a week of taking hydroxychloroquine and in less than a month I was feeling a lot better, still a bit achy but the naproxen was dealing with that. Most importantly I had energy again. Luckily (weirdly) for me I was on Furlough leave throughout all of this.
So I’m better now right?
By May I felt supercharged, looking back it was a bit like I was on a high, I was still on Furlough, we were still in lockdown, I needed a project. The weather was lovely so I decided I would sort the garden out. The garden I should point out was in need of more than a ‘sort out’ it was more of a landscaping exercise and involved dismantling a shed and it was just me. So I went at it, like I do, with enthusiasm, drive and stubbornness, I pushed myself and it was a joy to see the results. It was hot work and I was in shorts and vests, no sun cream because I don’t burn (I’ve always been blessed like that).
I can remember saying to my best friend “I feel invincible, this is amazing I don’t feel the usual aches I would if I had been doing this”. I thought I was cured and super Sarah was back and could take on the world, I felt so elated.
By mid May I was feeling terrible, the aches were back with a vengence, I was exhausted, sofa bound and the brain fog was returning. This was when it began to dawn on me that this might not be plain sailing.
Rheumatology upped my dose of Hydroxychloroquine but it took a lot longer to feel better this time. I learnt that Ultraviolet light is a probable trigger for my condition and that I needed to wear factor 50 suncream at all times April to October and cover up in the sun. I bought an outlandish sun hat and some UV protection clothing. My children started calling me a Vampire. I had to start taking vitamin D supplements.
I also learnt that I have to pace myself, that I am likely to create a cycle of boom and bust if I do too much. This is still the trickiest thing and I have not yet mastered it. I am used to being the person that goes the extra mile, pushes herself as hard as she can go. I have to stop doing this.
I am beginning to learn to manage this but it’s hard, I can’t do as much as I used to or I get a ‘flare up’ this is the term I have learned to use that means all your symptoms are firing up again. I am anxious about going back to work and how I can manage this and single parent at the same time. I have learnt that stress makes me flare up so I am trying to practise better relaxation. I still feel like I am a work in progress.
Fast forward to February 28th 2022
It’s rare disease day and I am feeling reflective which is why I have dug this article out and re-read it. I am currently in a flare up which along with usual symptoms has resulted in an infected saliva gland, probably Sjogrens related. The infection and antibiotics have knocked me for six so I am feeling a bit gloomy. BUT this is the first big flare up I have had since before Christmas so this is progress.
Much has changed since January 2022. In October I lost my job, well more chose to leave because it wasn’t an option to stay, it got to the point where I was working for a week, and then sick for two, over and over again. The combination of a big, responsible (fantastic) and at times stressful role which I used to thrive on, became a trigger and the hours were too much for me to handle. My consultant advised me I needed to work fewer hours in a less stressful role. With the support of my ex employer I managed to take some time out and reassess.
Last month I started to take on some freelance work, working hours that suit me and at the moment I feel positive that this will work out (the sick pay is crap though).
I am still doing battle with this frustrating disease. I am on more medication, stronger pain killers, medication to help my Raynauds. I have done a CBT course which has helped with the low mood going through something like this can create. I am on a pain management course with Addenbrookes which is fascinating and helpful. I am learning all the time. I reach out to virtual support groups which are so helpful. I particularly recommend the Lupus Support UK group on Facebook, they are a positive community of warriors who are happy to answer any questions no matter how daft or trivial they feel and give support and understanding when you need it.
Apologies if this last bit is not quite as well written, I have a foggy brain and can’t quite articulate myself today…..