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Helping Others Cope With Your Disease Progression
Some may argue that it’s not a patient’s responsibility to help others cope with their diagnosis and disease progression. While this may be true for some, others find satisfaction and comfort in supporting loved ones through the turmoil that can come from living with a life-threatening disease.
Not only can it feel good to help others cope with your disease, it can be incredibly therapeutic to help other patients with their own disease progression. There is a level of support and understanding that can only come from fellow patients. Of course this can come at a cost emotionally, since it can be devastating when someone you know and love dies from their disease. That being said, the benefits often outweigh the potential risks.
If you’re a natural carer living with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), you may wonder how to help those around you cope with your disease progression. Below are a few considerations to try.
Be realistic, and talk about the “hard stuff”
In a way, if the person living with the life-threatening illness can talk about it, then it gives permission for others to open the door into difficult conversations. People who love you are undoubtedly having those conversations with others or in their minds, and likely considering their worst fears. If you can open the door to having those conversations aloud and showing your friends and family that it’s okay to consider the hard stuff, it might make them feel less alone or fearful. As a patient, it is important to do this once you have had an opportunity to safely explore and talk about the hard stuff with the appropriate supports. This is only helpful for others when you are comfortable talking about the difficult topics yourself.Use humour
It’s true what they say about laughter — it can be the best medicine! Using humour is not only helpful in making patients and their loved ones feel better emotionally, it can also lighten the mood in larger populations of people including colleagues or teammates. Sometimes when sadness, fear and anger take over, laughter can feel really uplifting.Offer to help others
Before your diagnosis, it’s likely that you were part of a reciprocal friendship, which means that you probably offered assistance to friends and family, as they did for you. Offering to help others with tasks that you would do if you weren’t sick maintains that level of normalcy throughout your friendship, despite your diagnosis. This also helps others’ understand that you are still competent to complete tasks that they might want your help with.Plan for alternative activities
Unfortunately living with IPF can mean that normal activities, such as playing sports or shopping, are no longer possible as your disease progresses and it becomes harder to breathe. Instead of cancelling altogether, offer alternatives. This helps others realize that even though your abilities may change, you’re still the same and want to spend time with those who love you.Ask for help
Sometimes others have a hard time accepting your disease progression and might unintentionally assume you don’t need help. When someone assumes you can complete a task on your own, when you know you can’t, it might indicate that they’re having a hard time accepting your declining abilities. When it’s appropriate, ask for help from others in order to reinforce that your disease is progressing and that you will need their help from time to time.For some people, supporting others through their disease progression might feel like added stress when you are simply trying to cope with the disease progression yourself. For other patients, helping others might feel meaningful. There is no right or wrong choice as a patient, but if you are looking for ways to help others cope with your disease progression, please consider some of the options above.
Have you helped loved ones deal with your disease? What about other patients? Please share your tips below!
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