Communication Is Key to Improving Quality of Life With Vasculitis

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by Allison Ross |

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Clear communication is crucial for all types of interactions. It’s the key to interpersonal relationships, business dealings, and artistic expression. But after a vasculitis diagnosis, it becomes even more imperative that a person knows how to convey their thoughts and needs.

When I don’t feel well, it affects my life in many ways. I sometimes become irritable and snap at a relative or loved one. It can be difficult to ask my physician about treatment, and easy to misunderstand the process they lay out. Often, problems can be avoided if I communicate the right way first.

The way I view it, there are three main categories of people with whom I discuss vasculitis:

  1. My family and friends (support system).
  2. My healthcare providers.
  3. Strangers who may not know anything about chronic illness.

Each one requires a different type of communication to maintain healthy interaction. Understanding them is just as important as them understanding me! This goes for regular conversation, too, but is even more important when it comes to my disease.

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Who’s in Your Wolf Pack?

Support system

The safest conversation is with the people who love me unconditionally. My emotions can be all over the place during a health setback — or even under normal circumstances, having dealt with depression most of my adult life.

In this column, I often talk about surrounding myself with the right people. It’s because I believe in that so passionately! As an extrovert, people give me energy. I need the right kind of interaction to keep my spirits up, as well as strong relationships with people who will be supportive and available.

There’s nothing quite like the freedom to express that I’m having a rough week, and a friend responding appropriately. It fills me with strength and hope, encouraging me that I’ll make it past the current obstacle and see the other side.

Healthcare providers

Several years into my illness, I had a realization: I’m able to choose who takes care of my health. This sounds like basic information, but it wasn’t apparent to me at first.

Sometimes it’s easy to feel as though you have to be seen by whomever is available in your vicinity. The absence of vasculitis care centers in every nook and cranny of the country means that the number of trained specialists is limited.

However, we have to make sure the doctor who treats us is the right one. Consider which values are important to you before seeking out a provider. If you’re matched with the right physician, it will be easier to communicate your questions and concerns to them.

It’s important to remember, too, that this disease isn’t always apparent on the surface. Routine lab tests can catch signs of a relapse or other concerning issues before we even know they’re present. Knowing how to talk about that is key to moving forward with any chronic condition.

Others

It can be difficult to summarize a lifelong illness for someone who’s never even heard its name before. How do we communicate the nature of our vasculitis lifestyle to a total stranger?

In some instances, it’s not necessary to divulge health details. But when dealing with a boss who doesn’t understand why you’re calling in sick so often, or going on a date with a potential romantic partner who wants to know more about you, it can feel obligatory to share. These scenarios require us to summarize a complicated situation, not knowing the reaction it will provoke.

So how do we communicate our health status in the best way? Ultimately, it’s up to each of us to determine our level of comfort and openness. While some patients become outspoken advocates, others prefer to remain private.

Tips

Though the door of communication might be ajar already, I ask the following questions to push it open wider:

“What do you mean by that?”

“I know you told me before, but could you please clarify?”

“What are your thoughts? Is it OK if I share mine?”

“I want to be sure you’re understanding my position.”

“What does that entail?”

“It’s important to me that we connect the right way.”

Regardless of what state of illness you’re in, it’s always possible to improve communication. We can improve our quality of life by making sure others understand us correctly first.


Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

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