Nearest and Dearest—and Reasonably High Expectations
Summer usually comes with expectations of socializing and activities with family and friends. It can often feel a little demanding, especially when fatigue and physical symptoms come into play. With this in mind, Elsa has collected tips for those you hold near and dear, to help improve their understanding of what life with a rheumatic disease is like.
You have made plans to take the boat out or eat out, but then it ends up being a day where you just do not have the energy for it. It hurts to be the one who is disappointing others and it can be hard to explain that it has nothing to do with your willpower.
How can your loved ones make it easier for you and understand your situation? Elsa has compiled tips from people living with rheumatic diseases. These tips are intended for your nearest and dearest to read, to set expectations at a reasonable level, and offer guidance on how they can best show their support.
Listening—and really just listening—to someone who needs to talk can be challenging. You may instinctively want to give advice, and of course, you should encourage and cheer them up—but remember that paying attention is a great way to offer your support. Listening itself is often part of the solution.
Knowledge is key. Read up on the disease and what it entails. Doing so means you will make a good sounding board when needed. The more knowledge you have about this chronic disease, the better equipped you will be to offer support and show understanding.
Just because your loved one is not able to meet one day or join on that day trip you have planned does not mean that they do not want to be with you or anyone else. This disease can sometimes be unreliable, some days their body does just say ‘stop’. Usually, it is a difficult decision to make and a disappointment on their part to have to stay at home when they do not have enough energy. Make sure that you are the person who allows your loved one to listen to their body and that you are not pushing them over their limits.
As the disease has flares—and the disease can flare up without warning—it is of great importance to be flexible and accommodating in everyday life. One day, an activity or a task might go very well, and the next day it may be a huge challenge. Talk to each other about how you can manage this in the best way. You should both find approaches to adapt to the day as it comes.