Adjusting to your diagnosis
Having a diagnosis of scleroderma can be difficult, but you don't need to feel alone. Here you can find answers to some of the questions you may have about your diagnosis.
5 min read
Scleroderma and you
For some people, diagnosis can be a relief because it helps explain the symptoms they have been having. However, it can also be scary. It's important to give yourself time to adjust, figure out how you feel and find out what you want to know.
While there is a lot we don’t know about scleroderma, there’s a lot you can do to manage your symptoms, so that you can continue doing the things that are important to you.
Substantial research is underway to unlock many unanswered questions and to find better treatment options for a diverse patient population.
– Doris
You can’t make the disease go away, but you can learn how to manage it and find a way forward that works for you.
Speaking scleroderma
It might sound strange, but scleroderma really does have its own language. There are many different words used to describe your symptoms. Unfamiliar names for the different tests. Terms for the way scleroderma affects your body.
You don’t have to become a medical expert but knowing some of the medical terms can help you to understand what’s being discussed and also help you to explain what you’re feeling.
Don’t be afraid to ask your doctor or nurse to explain the important, complicated or unusual words to you.
You don’t have to become a medical expert but knowing some of the medical terms can help you to understand what’s being discussed and also help you to explain what you’re feeling.
Some people are better at explaining things than others. Try to pick someone who describes things in a way that makes sense to you or ask again until you properly understand. Your doctor may not realise you have not understood the medical terms and won't mind giving you a fuller explanation.
Find definitions to medical terms here.
Lean on those around you
There will be times when you need to rely on others to help you. Start by deciding who to tell about your diagnosis and how you want to tell them. There will 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, such as your employer etc.
There’s no set way to tell them—it’s up to whatever is comfortable or manageable to you and you can reveal as little or as much as you like. It’s your choice.
Scleroderma is a difficult disease to explain but information leaflets or websites like this one, can be a great help. Mostly, people will want to know how they can help. As time goes by, the kind of help you need will become clearer and you’ll be better able to seek specific help with specific tasks.
Prepare for bad days
Think about which person is best suited to help you.
What might they need to know and do?
What phone numbers might they need?
(e.g. family, friends, school, work, caregiver, doctor).
Sometimes your appointments with your doctor or nurse can feel very functional, like you’re just talking about symptoms and the disease. Don’t be afraid to talk to them about the emotional side of dealing with scleroderma. With their experience, they can give advice on how to look after your mental health as well.
Take every day as it comes
Your future can feel uncertain with scleroderma. Try to focus on the things you can control and the things you can do. It might take a while to adjust and learn how to manage your symptoms, but over time, you’ll find a way to move forward.
Symptoms of scleroderma can be managed.
You may also like to read:
Making the most of your appointment
Managing symptoms
Support
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Mindfulness All-Party Parliamentary Group. Mindful Nation UK. Updated 2015. https://mindfulnessinschools.org/wp-content/uploads/2017/09/Mindfulness-APPG-Report_Mindful-Nation-UK_Oct2015-1.pdf [Accessed December 2021].
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Cavanagh K et al. Can mindfulness and acceptance be learnt by self-help? A systematic review and meta-analysis of mindfulness and acceptance-based self-help interventions. Clin Psychol Rev. 2014;34(2):118-29.
– Grazia