Sue's Story

Sue lives in Lincolnshire with her husband. She has scleroderma and is also living with Lupus (SLE), Pulmonary Hypertension, Sjorgrens Syndrome, Rheumatoid Arthritis, Raynaud’s, Bile Salt Malabsorption (BSM) and Cardiovascular Autonomic Dysfunction (CAD). As of June 2023, Sue has been told that she also has Chronic Kidney Disease (CKD) and issues with her liver. She is currently undergoing further tests for both of these.

Sue was initially diagnosed with lupus in 2007 after being referred to a rheumatologist. This eventually led to her diagnosis of diffuse systemic sclerosis one year later.

“When I was diagnosed with lupus I was a little shocked, but also relieved that I finally had a diagnosis. I had been ill with so many chest infections and niggly ailments that took forever for me to recover from over the past few years and suddenly everything fell into place. I had a reason for feeling so tired and wasn’t going insane!

My diagnosis came after I’d had an operation on my right leg. It wouldn’t heal and I was in a lot of pain around my ankle, which I hadn't experienced before. I found it difficult to walk and the pain was excruciating. I was sent to various consultants to see what the problem was. I saw an orthopaedic consultant, the fracture clinic, and various others before I finally came to see a rheumatologist. As soon as I walked into his consulting room, he said to me ‘I know what you have: it’s lupus.’ It was apparently obvious to him by the red markings on my face.

This then led to further tests and investigations. I had already been diagnosed with Raynaud’s many years ago when I was 13, and this led to the thought process of scleroderma, which was confirmed along with Sjogren’s Syndrome. My rheumatoid arthritis had also been diagnosed many years ago, although I’ve never had any follow-up.”

Sue says getting a clear diagnosis is important: “I found that once a diagnosis had been made, everything became so much easier to understand and I was seen by various consultants who all added their piece to the jigsaw that had now become my life. I visited so many different hospitals for different tests.“

In 2015, Sue was diagnosed with systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH).

“I had shortness of breath. I was at the clinic, and they referred me to the PH team. The consultant ordered right heart catheterisation, and then it was diagnosed. It is under control now.”

SSc-PAH is when a person with systemic sclerosis has high blood pressure within the pulmonary arteries. This can lead to additional strain being placed upon their heart. In addition to this complication, Sue has most recently been told that she has issues with her kidneys and liver, likely due to her scleroderma. She is waiting for further tests.

Since her initial lupus diagnosis, Sue has undergone a variety of tests and prescribed several different medications.

“I was initially put on steroids and hydroxychloroquine, then other medications followed as things slowly began to be uncovered. I also underwent lung function tests involving treadmills etc. My rheumatologist eventually referred me to the Royal Free Hospital in London. I am still under the care of the team there, but I also have shared care with a rheumatologist at my local hospital where I now live.

I’m on several different medications right now, including methotrexate and hydroxychloroquine, tadalafil for the pulmonary arterial hypertension, colesevelam for my stomach, a form of vitamin D called cholecalciferol, prazosin, folic acid, apixaban, painkillers and eyedrops. I also get protein drinks because I lose weight every so often due to problems with eating.

It’s a lot to remember to take – I used to be someone who wouldn't even take a headache tablet! Thankfully, I haven’t had too many issues with side effects. My main concern was the weight gain from the steroids that I was given initially, but once everything was under control and I had stabilised, the steroids were slowly reduced and stopped.”

Sue has had to make a number of adjustments to her lifestyle since her diagnosis. One of the most significant was having to take early retirement at the age of just 49.

“One of the biggest impacts that my health has had was that I eventually had to retire from my job in the NHS. I found this quite difficult – I was only 49 and hadn’t considered giving up work, but my health and working environment meant I couldn’t carry on.

At the time, my boss was brilliant. She was the Deputy Director of Nursing at the trust I worked for, but she eventually got moved and my base changed to another hospital, which was much further away.

I found the commute difficult. Then my office got moved from the ground floor to another, higher floor. Having to walk up and down the stairs was hard work and there were other things I just couldn’t do. In the end, I had to take some time off and that’s when I was offered redundancy, which I took.

Considering that I worked in the NHS, the response to my condition by my employer was very poor. Not even the HR team took the time to understand what was happening to my health and what I was going through.”

Sue also says that she is unable to do many everyday activities in the same way as she used to.

“Before our dog died, my husband and I used to enjoy walking him, but walking now takes its toll. Sometimes my husband would drive us to the seafront, and we have a slow short walk along the front, which was lovely, especially when it is a beautiful sunny day, it lifts your spirits.

Unfortunately, because of my lungs, I can’t do much before I’m tired and in pain – only about 10 minutes worth. Cooking, dressing, gardening and general housework are all difficult, but I try to do what I can slowly. With the BSM I can become housebound for quite a while, and this can be difficult.

But by far the biggest change we had to make was to move from our house in Hertfordshire to a bungalow in Lincolnshire! I was struggling with the stairs and the hilly area we lived in at that time. I realised that I could no longer do what I was used to, like walking, shopping and, sadly, working. Life became limited in a lot of ways; large obstacles and even small, seemingly unimportant chores became a challenge. However, I manage as best as I can. Help is always around me and my husband cares for me, so we have ‘adapted’ together.

Apart from the big move, I have come to accept that I cannot do the things I used to, and if I do anything above my capabilities now, then I know I will pay for it for the next 24 hours at least, with the pain and breathlessness that will result. Still, I am aware then that I need to rest, sleep and recharge my batteries.

Most days I stay as positive as I can, but there are sad and frustrating days too. Each condition brings its own problems to deal with and this makes everyday chores difficult, painful and frustrating!

My pulmonary hypertension slows me down. Walking is a bit of an issue as I get out of breath quickly. It does have an impact, but it is not as bad as for many people.

But you’ve got to be positive. I’ve got a good husband and family. I’m grateful for a lot of things.”

We also asked Sue if her condition has affected her relationships and family life:

“Well, I don't feel that a lot has changed. We have always been a close and supportive family, and this remains in place. It’s just me and my husband at home now as our boys have grown up and left the nest, but they are concerned obviously, When they visit, they all do their bit in the house and help my husband where they can. I guess I can't do as much for them as I would like but there is a great understanding from all my family and friends. However, on my part, I do feel guilty and that I am a burden though they all tell me constantly that this is NOT the case!

Friends and family help simply by being there to support me and to listen to me. When I am having a bad day and in a lot of pain or my breathing is causing me grief, I know they understand that I need to rest and let my body take the time it needs to heal itself ready for the next round.

The advice that I would give to someone living with a chronic illness would be to stay positive! I always say that if you’re not positive you may as well be pushing up the daisies because it can really drag you down if you let it.

There are hard days, there are frustrating days, but every day to me is a bonus, so try to keep a smile inside and remember you are worth everything and life is very precious. If you can find alternatives ways of doing things then do not be afraid to try different routes or methods. New opportunities can also arise so be ready for a challenge. Getting angry with yourself and the world will not change anything, although this feeling still needs to be voiced and accepted. Live life as best as you can. Accept and adapt to your new limits.

I do feel that living with a chronic condition has definitely changed my perspective on life. Suddenly, the things you did and took for granted become difficult to do and restrictions are placed in your way, but life is short and I do what I can do. I try not to live on the ‘what ifs.’ I enjoyed my work and still miss it to this day, but you have to deal with today and the future, not the past. I still have my family and feel ready for what challenges and changes my conditions may bring to me in the future. I try to remember I am still me, just a little ragged around the edges!”