I want to start this blog by saying happy early Rare Disease Day. To celebrate this rare disease journey we are on, I want to focus on one aspect of rare disease care that I feel sometimes doesn’t get addressed adequately, which is the emotional toll that simply making appointments can take. The long wait time to get into specialists and care providers is a topic that is discussed often, but one of the biggest challenges I continue to face is the struggle in booking appointments that are considered unique or uncommon and how exhausting it can be to even get these appointments made and performed. I have had a really good example flare-up this month, so I wanted to take the opportunity to talk about it in this blog. If you spend time with this same struggle, know that you are not alone, and your feelings are valid.
One aspect of my condition that is not discussed often is that fatty tissue deposits sometimes fail to form or form properly. In women, this can mean a breast may not form at all, while the other forms naturally. When I was in my 20s, I went through a breast reconstruction surgery to build an artificial breast on the side that did not develop; because of this, I am monitored by breast surgeons as part of my continued care. Two years ago, multiple lumps were found on my breasts, and my general care team raced to get me an ultrasound, which then became a mammogram to ensure there was no breast cancer risk. However, my local hospital did not feel comfortable performing tests on the artificial breast, so it only completed testing on the left side of my body. After a long year waiting to get into my breast specialists, they agreed I should have a specialized scan on the right side of my body as well. This began my latest experience with fighting for care.
Upon getting the requisition for the scan, I called the medical imaging department with my requisition and was informed by the admin staff that, since I was not yet 40, she did not see why I needed this scan. I informed her that my specialist team has determined they want this scan done, so I do need to book it. I explained I have a rare condition, with unique surgeries, that require this scan. She answered that she had never heard of CMTC, so she didn’t think it was necessary, and the technicians would probably want me to provide previous images, which I did not have. That was the fundamental issue. She said she couldn’t book an appointment without more information. The next step was to call back my surgeon, who, of course, doesn’t work every day, so they called me back a week later, saying they were sending me somewhere else. Finally, I have been able to connect with this imaging department, but I still have to wait for the specific team to call me back and book an appointment.
Overall, attempting to book the imaging appointment itself has taken a month, which does not even include the time needed to wait for an opening for the appointment. This is just to get an appointment booked. This merry-go-round of calling different specialists and imaging departments and having to answer the same questions about my condition and being dismissed is not just tiring and defeating, but it’s also emotionally exhausting. It’s tempting to just not bother when it’s this hard, but you know it’s important for your health, and the hurdles just need to keep being cleared, no matter how frustrating and exhausting it is.
This is a situation where having a support system is critical, friends and family in your corner you can vent with, and doctors willing to keep trying to help are the only ways you get through this; and you will get through this, it just takes some energy and time. This feeling of defeat can be a familiar friend, but there are so many success too that you have to take them together, this month I had an almost 2 hour appointment where I felt heard and we went through my whole history and got some really good answers and evidence; so though this month has been hard, I leave it on a high note and those notes are what you must follow through these journeys, chase the successes and clear those hurdles.