Crash course for people around you
The previous blog post was about ignorance and preconceived notions that you can encounter about rheumatic disease. This time, we continue with how you, who live with a rheumatic diagnosis, can approach the people you have around you, to make it easier for both yourself and others.
Partner, children, parents, friends and colleagues—what do they really need to know and how can you convey what you want to say?
We are all different in how much we feel we want to share, and there is no right or wrong. But it can be good to think through what those around you need to understand about your diagnosis, especially if you sometimes feel misunderstood. And don't take for granted that others know things just because they are obvious to you.
Explain in a simple way
Rheumatic diseases affect joints, muscles and bones. The disease often goes into flare ups, i.e. sometimes you feel worse than usual, and periodically you may feel perfectly fine. Sometimes you can suffer from what is called fatigue and become very tired.
You don't need to use complicated words or go into details, but the broad strokes are enough.
Share what unpredictability means
Explain that your disease is difficult to predict. Some days everything feels great, other days the energy is blown away. This can make it difficult for you to plan, no matter how much you want to.
If the unpredictability frustrates you and makes you feel "boring", you are not alone—many whom we have spoken to confirm this. But if those around you know about the problem in advance, it will be less painful both for you and others involved if, or when, you need to change plans at the last minute.
Give a couple of examples of how your diagnosis impinges on your everyday life. You may find it difficult to climb too many stairs, you may need to take short breaks, or cannot take the car and go shopping when you are affected by fatigue.
Choose examples that are relevant to the person you are talking to—you can cover different things for different people.
Give tips on where to find more information
If someone wants to read up on what it can be like to live with your diagnosis, refer to for example Arthritis Foundation. Their web page contains plenty of information.
Share how you want it
Be clear about what is important to you. How do you want it? Would you rather try something yourself before being offered help? Is there something specific that you are having difficulties with, and that you would like to avoid asking for help with time after time?
Remember that we are all different personalities with different needs, and that the same diagnosis can also affect us in different ways. Rheumatic diseases are largely invisible and shifting. Only you know how you want it.