Cystic Fibrosis: Talking to Loved Ones
When getting a life-changing diagnosis, it may be hard to discuss it with others. It is isolating when you feel others do not understand; your family and friends may not have cystic fibrosis or know people affected by the disease. You may also be dealing with shock from the new diagnosis. Chances are you may have only recently found out about it. If you do not know anyone with the disease, you may not be sure how to bring it up with others. In the case of cystic fibrosis, a diagnosis typically occurs during childhood. This makes talking about the diagnosis difficult because the person in question is young. However, there are many approaches to talking about this disease.
Getting the Courage
The first step in bringing up cystic fibrosis to a loved one is getting the courage to have the conversation. Often, we don’t really know what to say in uncomfortable situations or topics. You may still be processing your own emotions about the diagnosis. Address your feelings of stress, anxiety, and depression first; you do not want to put your feelings on another person. When you are ready, figure out when you want to have the conversation. To avoid freezing up or getting defensive, have a plan. Know what you are going to say and practice the tone. Set up a meeting ahead of time so that you and the other individual are prepared. The age of the individual and their reaction should also be considered when planning. If the person is a child, finding a way to soothe them after the conversation may deescalate feelings.
Do Your Research
Considering your audience is vital to have a successful conversation. You may want to start by educating yourself on all the resources out there. Have all the necessary information available in case the individual has questions. Pamphlets, websites, and doctor’s information are all good tools to communicate the diagnosis. They may immediately ask for a prognosis or about treatments. Be well-versed and ready to broach any topic that may come up as they adjust to the diagnosis. They may already be familiar with the disease, or they may have never heard of the condition or met anyone with cystic fibrosis. In that case, having more information will help them process what changes the disease will bring. However, if you are the parent of a child with cystic fibrosis, do not feel pressure to be an expert. All the facts and information will become available eventually. Relax and compose yourself, because you do not want to relay stress or anxiety during your conversation about the disease.
Setting the Tone
Talking to a loved one may sound intimidating. You might be unsure of how to start the conversation or the proper setting to discuss cystic fibrosis. Talking can help someone diagnosed with cystic fibrosis address their emotions. It may also help the patient’s siblings and friends, who may be affected by the hospital visits, doctors’ appointments, and other life events. The most important factor is that you listen attentively and be supportive. Taking the proper time so you will not be interrupted is essential. Ideally, you would give the loved one some time afterwards to process the information. Pick a day when they are not busy. In terms of setting, it is best to pick a private venue. This will allow the person to express a range of reactions. Talking to someone individually is more effective than in a group. Ultimately, you know the individual best. Pick what is most suited to their needs.
The Actual Conversation
Once you start the conversation, take your cues from the other person. Ask the person if they would like to talk about what they are experiencing. It’s best to allow the individual to decide when to talk, considering they might not be ready yet. Nonverbal communication is very important for your conversation. Your body and facial expressions are the best ways to convey care and support. Maintain eye contact and listen attentively when speaking. Silence may be uncomfortable, but it is a way to allow the person to process the information. Next, you will want to choose your words carefully. Acknowledge how difficult it is to have this conversation. Be careful about sounding insensitive or dismissive. Active listening is your best tool after conveying your message. If you need to ask questions, use caution to avoid putting the other person on the defensive. The same strategy should be used when giving advice. Consider that the person may not be as receptive as you would have hoped. Whatever the situation, be prepared for many questions. They might want logistics or ask questions that are hard to answer. It is important not to give answers when you are unsure. Express that you do not have all the answers, but will try to find them.
Getting a Range of Reactions
Be prepared for a wide range of responses. Some may welcome your invitation to talk about cystic fibrosis; others may prefer to say as little as possible or nothing at all. Allow them to express themselves. This may change over time, especially once the individual has had time to process the information. Feelings of sadness, anger, confusion, and helplessness are all normal. Consider that either the individual with cystic fibrosis or those affected by the diagnosis have their life completely changed. Allow them to mourn their current life and move on to their new reality. If the person needs it, a professional therapist or counselor may help them address their feelings. A support group may expose them to others going through the same situation. Since they may not interact with many people suffering from the same condition, finding familiarity with others may help them talk about their diagnosis. Find a way to help the person while still expressing your feelings.
Following up
After the conversation, there needs to be a follow-up. It is beneficial to wait a few days. The other individual may approach you as well once they have had time to process the diagnosis. This might be the time to start delving into a deeper conversation about handling the diagnosis. Practical matters, such as healthcare and finances, may come into play more in the follow-up conversation. This may be another opportunity to convey your support. Reiterate that you care about them and are available to assist them through their medical journey. Whether it is taking them to the doctor or caring for them when they are feeling unwell, they will appreciate your help. Continue to listen to their thoughts and concerns.
Conclusion
You are exhibiting great courage just by opening the lines of communication. Talking about any disease is challenging. In fact, the hardest part will probably be the initial conversation. With cystic fibrosis, the challenges are greater because it concerns children and the effects are life-changing. With help and support, your family can succeed and thrive. Once the initial conversation has occurred, your loved ones can plan treatment, adapt their lives, and find emotional support.
