Last updated: May 2023
It is managing the symptoms that take up the vast majority of my attention. Just living every day in this body takes time and effort. Heck, sleeping still requires me to set appointments with yet another specialist. Doing the things that I need to do to take care of my health is attached to meeting with someone else for assistance. I was not prepared for this to come along with the multiple sclerosis package.
Chronic illnesses come with their own unique set of challenges. The very nature of MS means that it is not going away and cannot be ignored. There are still times when I cannot wrap my head around the idea that this disease is here to stay. Dealing with concerns around lesions and the myelin sheath takes enough out of a person without adding the results of MS. As symptoms appear or others worsen, appointments become a regular routine.
On whom it takes a toll
One would think that it is the physical part of appointments that takes the greatest toll on me. Going to an appointment has a pre-game element to it. Dressing the part and traveling to get to these are its own story, as is getting to the building or office. Of course, the appointment itself can be exhausting. I could spend an entire day dealing with an HCP when I count the time that comes before and after the appointment itself. Despite the work involved, it is not the actual appointments that take the most out of me. It is the mental toll.
Keeping track of my appointments is easier than ever for me. I get notifications on my smartphone, and one touch puts the appointment into my calendar for me. Looking at my monthly calendar and seeing the red dots that denote my upcoming visits can make me feel blue. It is a stark visual reminder that I have a chronic illness that requires my time and attention. It reminds me that I have days of effort coming ahead in order to help with something that is not well with my body. Thinking about appointments is tiring.
For those newly diagnosed
Spending so much time with a medical professional was not on my MS bingo card when I was first diagnosed. No one mentioned it to me. However, I now make certain to let the newly diagnosed know that they should be prepared for medical appointments. Not every person living with multiple sclerosis will have a rigorous a schedule as me, but it is better to be prepared than to be blindsided by the multiple medical visits that MS can bring.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: