It can be really scary when a healthcare professional gives you a diagnosis. Especially when they tell you how rare the diagnosis is. You have so many questions you want and need answers to, you are scared and you also feel a little clouded. Here are some of the things I found helpful when I was trying to process my diagnosis and prepare to meet with my oncologists:
- Do your research AFTER you’ve received a diagnosis from the Dr. – in the world of the internet it’s so easy to get down a rabbit hole of “what ifs”. I absolutely refused to do any researching of my symptoms while I was waiting to get my biopsy results back and I am so glad I did. We all like to think that if we watch enough Grey’s Anatomy we are Dr’s ourselves, but the truth is, we are not and adding stress is not ideal when you are dealing with an already stressful situation. Once your biopsy results have come back, or you’ve met with a Dr. who can confirm what the diagnosis is, then start your research. Dive in, full fledged. Make sure, if you are searching on the internet you are only learning from real medical sites. You can ask your Dr. for a list of sites they trust. Learn EVERYTHING you can about your ailment.
- Write Down Any and All Questions – Once you’ve done your research from a reputable site, make sure you start to document your questions for your next appointment. No question is silly and if it takes your whole appointment, so be it. You need to be in complete understanding of what is going on with your body.
- Find a Support Group – Again, the internet can be a wonderful place! I immediately linked up with a Facebook group that was dedicated to those who have or are caring for someone with a Desmoid Tumor. I had so many questions and for a while I didn’t post or even ask questions. I silently observed what others were saying and answering and I got a lot information that way too! Once I felt more comfortable I began asking questions and it has been such a lifeline for me. Even on days where I just don’t want to feel alone, I check out the group and it makes me feel better that someone out there feels just like I do.
- Bring Someone with You to All Appointments – It is crucial to have more than just one set of ears listening to the things the Dr. is telling you. Sometimes, when we are fogged, or hung up on something, we miss things that are said or hear them differently. Personally, if I felt the news was bad, I would almost stop listening unintentionally because I was emotional. It was so helpful that I had other people with me to listen when I couldn’t. I understand that being able to have someone with you at each appointment may not be possible for some so ask if you are able to voice record your meeting with your Dr. You will be able to go back and reference points of the conversation if need be, or even clarify if you are remembering it differently.
- Know Your Options – In most cases there are multiple ways to go about treating and or managing your diagnosis. Make sure you are researching all of the options the Dr. has given you and even those he or she hasn’t mentioned to make a decision you feel most comfortable with. There are positives and negatives to everything so make sure you understand them all for your particular circumstance so you are making the right decision for your healing journey.
What helped you when you were first diagnosed? Sound off in the comments below!