Since my son was diagnosed with cystic fibrosis 11 years ago, there have been numerous occasions where I have felt unsupported, either by family or friends. It could have been that my friends and family didn't know what to say or maybe they couldn't understand what they couldn't see. I have learned over the years that a lack of support generally comes from a lack of understanding. It is because of these instances that I have realized, more than ever, that it is my job as the mother of a child with CF to not only advocate, but to educate.
Although there are countless things that a CF parent does not need to hear, here is a selection of the ones that I and other CF parents commonly hear. I hope this list helps prevent other families from hearing some of the hurtful things that our immediate family has heard. Feel free to pass it along to friends and family after a diagnosis.
What not to say to a CF parent:
- CF is just like asthma. No, it isn't. It isn't like asthma at all and although asthma can be a debilitating disease, CF and asthma progress completely differently. They both affect the airways in the lungs but in different capacities. A little research into both can go a long way.
- There will be a cure soon. I wholeheartedly believe that there will be a cure for CF. There are so many advances and exciting news that are shared more now than ever. Will there be a cure SOON? That part I am unsure about. I know that we have to deal with the here and now. Hopefully, there will be a cure in my son's lifetime, but the fact remains that there isn't one today, and we still have to face that.
- He looks healthy! My son does look like a healthy kid, but he still has CF, so looks can be deceiving. My son can look and act healthy and still have declining lung function. He isn't in a wheelchair. He isn't on oxygen. He isn't living in a hospital. Therefore, people assume that he is healthy and dismiss what I tell them about the progression of his disease. He looks able-bodied, yet his body is fighting a war that we can't see. This is why CF is known as an “invisible disease.”
- I knew someone who had CF, and they died. Don't ever tell a CF parent this. This is never appropriate to say concerning any medical diagnosis. The end.
- We don't have anyone on our side with CF. It must come from your family. Actually, it takes both parents to equal a CF child. Each parent must be a carrier and pass along a mutation for a child to have CF. Looking back at both our family trees, neither my husband nor I could find any instances of another relative with CF. The fact remains that it took both of us to pass along this disease. CF is never one-sided.
- He/she must not have a bad case of CF. The disease affects each person differently. There are more than 1,700 mutations that cause CF, and everyone suffers differently. Some people have more digestive issues, while others might have more pulmonary issues. A large number of CF patients have both. Until recently, my son had issues only with his digestion; then his lung function started to decline. You never know what will happen from one medical checkup to the next.
- Hopefully this is the last time CF puts him in the hospital. Although that would be ideal, that likely will not be the case. It is common for CF patients to be admitted for “tune ups.” I never want to be the one bearing bad news, but it is not realistic to think that he won't be going back into the hospital. Instead, we can hope that when he leaves the hospital after an admission, that he is in the best health that he can be.
Having the support of your family and friends is crucial for the parents of a child with CF. When you feel unsupported, you can feel very lonely. Being the caregiver of a child with CF is isolating in its own right, but when you hear comments like the ones I described - or in some cases nothing at all -- it can make an already painful situation that much more difficult to navigate.
So, what are some supportive things that you can say to a CF parent?
- Where is the best place to learn more about CF?
- How can I help?
- I am here if you ever need someone to talk to.
Most important, just be there cheering them on. What CF parents need most of all is a wonderful support team surrounding them.
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