Being in a relationship with someone who has CF can be tricky, whether as a co-worker, friend, partner, or family member. It can be hard to know exactly what to do to support them when you aren’t sure what they are going through. Following is a list of simple acts you can do to make the person in your life with CF feel loved, appreciated, and supported.
1. Bring, prepare, or buy us a meal.
Most people with CF need to consume a ridiculous amount of calories to fight infection and sustain our bodies, which work extra hard to function. Frustratingly, cooking can require a lot of physical and mental energy that on some days we just don’t have readily available, especially when sick. I always feel so loved when someone provides a meal for our family and takes the responsibility off of me.
2. Clean our nebulizer cups.
Growing up, my mom boiled my nebulizer cups to clean them. She even cleaned them when I came home from college on breaks. It wasn’t until adulthood that I realized what an act of love this was. Cleaning neb cups just sucks, but you’ve got to do it. Help a CFer out, and they will thank you!
3. Offer to help check off an item on our to-do list.
I don’t know about others with CF, but I feel like my to-do list is constantly growing. Between refilling medications, fighting insurance battles, scheduling doctor’s appointments, and all the other “normal people” stuff, I never get to the bottom of that dang thing. Offer to help check off an item that you can complete, such as grocery shopping, picking up medications, taking a dog on a walk, etc.
4. Offer to help carry groceries, children, heavy items, etc.
People with CF can’t breathe very well. Guess what? Carrying heavy items just makes us more breathless. Offering to carry groceries, children, heavy boxes, etc. when you can helps us save the extra energy needed to complete other necessary activities of daily living. Read about the “spoon theory” to really understand this point.
5. Continue to invite us to places even if we have declined or canceled in the past.
FOMO (fear of missing out) is a real disorder, and I suffer from it 100 percent. CF gets in the way of my social life a lot of the time. Whether it’s IVs, fatigue, or hospital stays, facets of CF prevent me from spending time with the people I love. I always feel truly cared for when I am invited out (again) after declining or canceling previously.
6. Don’t ask us, ‘How are you doing?’ Ask, ‘How can I help you?’ and ‘What are you struggling with?’
When someone asks me, “How are you doing?” I struggle to answer and usually settle on something like,“I’m doing well. Hanging in there. I wasn’t feeling too well last week, but I feel much better this week.” I don’t want to blatantly lie, but I also don’t want to be a Negative Nancy in my response. If you really want to know how we are doing, use more intentional and direct questions that give us an opportunity to talk about our current experiences without relying on a cliché response.
7. Ignore our cough.
Ugh, the cough. I know I am with true understanding spirits when I erupt into a coughing fit and no one stops the conversation or pays any attention to the red face and horrible coughing expression. Please, just ignore the coughing (unless we are on the floor or puking) and give us time to calm down and resume as normal. We are totally fine!
8. Encourage us to stay compliant with medication (and congratulate us when we are).
CFers get a bad rap for being medically noncompliant, meaning we don’t do what we are supposed to do. I have issues with this reputation because the general population can’t even drink the recommended amount of water in any given day, but people with CF are expected to take 50 pills a day, complete hours of breathing treatments, consume thousands of calories, monitor blood sugar, and never miss a beat. It is difficult to be medically compliant. Every. Single. Day. We need encouragement, and we need someone to acknowledge the work we put into staying healthy.
9. Gift ideas: gift cards to restaurants, gummy bears, words of support, and understanding.
If you need to get us a gift, gift cards to food establishments are always appreciated. Patients can use them while in the hospital or when we are too sick to cook. Also, I don’t know why this is, but CFers love gummy bears. There must be some sort of gummy bear mutation. Give us a 5-pound bag of Haribo Gold-Bears, and we feel all kinds of feelings. Lastly, some days I simply need a friend to tell me they might not fully understand what I am experiencing, but they support me. Words of encouragement, admiration, and respect can promote healing and drive when in the thick of a brutal disease.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.