Many people who live with a health condition know the balancing act between “I’m fine” and “I need some help.” It can be a tough place to be and absolutely paradoxical. No one wants to be a burden. We don’t want to feel incapable. And yet there are times when a health problem flares, causing us to be less able to do a task, like making dinner. We could use a hand.
The truth is that living with any type of chronic health care condition requires a level of assistance from others. No one can do this alone. It is inherent to managing rare diseases of any kind. We need help – not only from our medical team – but also from family and friends. Accepting physical limitations, in a society that values independence and self-reliance, can be challenging.
When we patients experience what I call “inconsistent capabilities,” it can be confusing for our friends and family. Maybe we were full of energy last month and dinner happened nightly without a hitch. But this month it’s another story.
Inconsistent capabilities can lead to misunderstandings and at times unfair judgment. As we start a new year, let’s look at some strategies for talking about these fluctuations and how to ask for and receive help.
1. Assess your capabilities and accept your limitations – whether they are full-time or just some of the time.
An honest assessment of your situation is a good place to start. Accepting that you have limitations can have a silver lining. It’s a time to reflect on what your strengths are, too. When you accept help from others, it opens up time to focus on other aspects of your life, to see all the possibilities.
2. Have the conversation.
Most people – and sometimes people you have known for years – may not understand how your rare disease affects you on a daily basis. We patients can be a little too good at “ not looking sick” and even people close to us might not understand the full picture.
Disease management requires a tremendous amount of discipline. One flare can start the dominoes tipping, setting off a series of interconnected health issues. Take the time to explain how you’re impacted and what it takes for you to sustain and maintain your stability.
3. Describe what you need.
We all have different ways of doing things. Don’t be afraid to be specific. Keep in mind that people will have different approaches and styles to being helpful. Some might jump right in and overstep. Others might be tentative and afraid to insult you by offering something simple, like picking up groceries for you.
You might find it difficult at first, but it’s mutually beneficial if your loved ones know how they can be useful. This could include picking you up from a medical appointment, sharing a meal, pitching in with housework or any other task that would lighten your load.
4. Remember that giving feels good to the giver.
When someone helps you, they get something, too. Being of service can be satisfying and fill the helper with a sense of purpose. Express your sincere thanks. These positive encounters can enrich relationships.
5. Look for your next opportunity to be the helper.
Think about the ways that you give of yourself. It could be in your expressions of love, wisdom or thoughtfulness. And on one of those days when you’re feeling good, find a way to return the favor to the special person who helped you. Then you, too, can enjoy the burst of good feelings that follow being of kind service to another.
