Beginning this past fall, I really struggled with some debilitating joint pain. I was diagnosed with cystic fibrosis-related arthritis about 14 years ago, but the past two fall and winter seasons have been the worst. I shared a bit about these struggles through my Instagram account, and each time I did, I received multiple DMs (direct messages) from others in the CF community.
The messages included people asking for advice in dealing with the flare ups and sharing their stories about years of dealing with joint pain. Some said that they had never mentioned joint pain to their CF care teams because they thought it had nothing to do with CF, and therefore, figured their CF team wouldn't be able to help.
For years, I dealt with symptoms that I thought were CF-related. I shared these symptoms with my CF care team, but they were unable to treat or manage them effectively. Turns out, many of these symptoms were also related to endometriosis, something I was diagnosed with just last year.
If I hadn't shared my symptoms with my obstetrician and CF care team, we may have never figured out the real cause. Now, I can get the best care possible and have a better chance at managing these symptoms.
Growing up, my mom was always pretty open about everything that was going on with my health, with all my different doctors. Because of this, I eventually did the same when I started going to doctor's appointments on my own. She set a great example and also taught me to advocate for myself, because if I don't, no one else will.
I want to encourage you to share all symptoms with not only your CF teams, but any other doctors and practitioners you may see. Here are some of my top reasons for sharing your symptoms with every one of your health care professionals:
- If they don't know, they can't help. I have found that, even if my CF team can't help me with symptoms directly, they can lead me in the right direction to get the help I need. Just last week I shared some symptoms I haven't dealt with in years and my CF doctor was able refer me to a specialist who can help me figure out what's going on. No one deserves to suffer. I know that finding the answers or help you need can be frustrating because sometimes it takes more time than you would like. But, if you aren't speaking up for yourself, you will never get the help you need.
- Untreated symptoms may turn into something more serious. The sooner you can get help for any symptoms and treat the cause, the better the chance you have at preventing something worse from developing.
- Better coordination of care. I have found that when all my doctors have the whole picture of what's going on with my health, they are better equipped to help me. If you only share a small piece of the puzzle, so to speak, doctors won't be able to help the best that they can. Without the full picture, they may incorrectly diagnose you, and they can't be blamed for that. In my experience, when I share everything with each of my doctors, they seem much more willing to work with my other health care providers, when necessary, to ensure I am getting the best care possible.
- Helps build trust. I have been to three adult CF centers (one of them twice) and have seen five different CF doctors in these centers (we moved around a lot while my husband was an active duty Marine). I learned that trust with CF teams is a two-way street and it takes work to develop. I have found that being open and honest with my care team is one of the best ways to build that trust. For example, sharing all the symptoms I was dealing with, being honest about my treatment compliance, and sharing supplements I was taking or interested in taking all showed that I was willing to trust them with my care. In return, they reciprocated that trust and honesty.
I hope this encourages you to start advocating for your own health and sharing the complete picture of your symptoms so you can get the best care possible.
