Adjusting to your diagnosis
Scleroderma and you
If you’ve been told you have scleroderma (also known as systemic sclerosis), you’re in the right place.
You will find lots of information here to get you started:
Up to date knowledge and advice from healthcare professionals who are experts in scleroderma
Real-life experiences of people with scleroderma just like you, who, with the help and support of their doctors and nurses, have found ways to carry on living their lives
You don’t need to feel alone living with scleroderma. You can find answers here to some of the questions you have about your diagnosis.
Getting a diagnosis of scleroderma can be a difficult time. Everyone reacts differently to news like this. It’s important to give yourself time to take it all in. Figure out how you feel and what you want to know.
Many people find the sense of uncertainty difficult to handle. They feel like they’re no longer in control of their body. Or their future.1
While there is a lot we don’t know about scleroderma, there’s a lot we do. More and more research is being done to answer the unanswered questions, and to find better and better treatments.
There’s a lot you can learn. There’s a lot you can do. You can’t make the disease go away. But there are things you can do to manage your symptoms and find a way forward that works for you.
It might sound strange, but scleroderma really does have its own language. There are some words used to describe your symptoms. Names for the different tests. Terms for the way scleroderma affects your body.
Understanding as much as you can about the disease will help you make decisions with your doctor about what might be best for you.
Your doctor will do his/her best to support you. But they might sometimes use medical language to explain things.
You don’t have to become a medical expert. Knowing some of the medical terms can help you to understand what’s being discussed and a few medical words can also help you explain what you’re feeling.
You can ask your doctor or nurse to explain the important words to you. Some people are better at explaining things than others. Try to pick someone who describes things in a way that makes sense to you. Don’t be afraid to ask. Your doctor probably doesn’t realise you hadn’t understood the medical terms.
It’s taken a while to figure out my connective tissue from my calcinosis. But I’m getting there. I’m not afraid to ask anymore. It’s my body and I’m not leaving until I understand what’s going on.
Person with scleroderma
Lean on those around you
There will be times when you need to rely on others to help you. Some people are happy to do this and others find it much harder.
Start by deciding who you need to tell about your diagnosis and how you want to tell them. There’ll be people you want to tell, like your close friends and loved ones. And people you need to tell because of how your symptoms affect you. People such as:
There’s no right or wrong way to tell them. It can be a difficult disease to explain. You’ll probably get a range of reactions. Mostly, people will want to know how they can help. At the start, you may not know what they can do. But as time goes by, it will become clearer where you need the help.
It can be useful to make a plan for any bad days. If you can, ask people to be on standby to help you with daily tasks, if needed. You can arrange with them:
- Who needs to be on standby?
- What might people need to do?
- Phone numbers they might need
Remember that your doctor and nurse are there to help. But at your appointments it can sometimes feel very functional, like you’re just talking about symptoms and the disease.
Don’t be afraid to talk about the other things that are bothering you. With their experience, they can help with other parts of your life too.
Take every day as it comes
With scleroderma, the future can feel very uncertain.1
Try to focus on the things you can control. And do the things you can do. It might take a while to adjust, and learn how to handle your symptoms. But in time, you’ll find ways to get on with your life in spite of them.
I’m retired and I really loved my work. But now I love other things and take one day at a time.
Person with scleroderma
Nakayama A et al. Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies. J Rheumatol 2016;43:1363-75.