Rare
It is estimated that less than half of one percent of people in the US have multiple sclerosis (MS). The number of African Americans living with the disease is even smaller. I am one of those African Americans living with MS.
Yes, I am aware that I am rare. That gives me a unique perspective on living with a chronic illness such as MS.
Disability comes with a number of challenges. It can open a can of worms if you are not prepared. But if you are mindful, you can overcome many of the challenges it presents.
You are stronger than you think. One of the first skills a newly diagnosed patient must learn is self-advocacy. You have to be your own biggest supporter. Be prepared to ask meaningful questions when you are with your doctors.
Write down your concerns and bring them with you to your appointments. Are your meds working? Does the doctor see progression? What can you do to slow it down? These are all good questions to keep in mind when you see your care team.
MS can be a very isolating disease. Don’t be afraid to ask for help. In most cases, friends, family, and even complete strangers are eager to offer a helping hand. You’d be surprised to see how many people were just waiting for you to reach out.
Make it a priority to expand your network. In-person support groups, online communities, and local events are a great start. As they say, it takes a village. Nowhere is this truer than when living with a chronic condition such as MS.
If you have a chronic illness, you now have a limited energy reserve. Basic tasks, such as showering, can feel like running a marathon. Conserving energy will become a priority. It is important to recognize and compensate for these new changes.
When you are on the go, make sure to listen to your body. Don’t be afraid to rest, hydrate, and or use your mobility equipment. These small changes will allow you the energy needed for tasks you deem more important.
Yes, living with a rare disease can be difficult, but not impossible. If you follow these simple concepts, you can avoid a number of frustrations. Self-advocacy, build a community, and learn your new body.
I am rare. This gives me a unique perspective. And if you are living with MS, you are too. Apply these strategies to your life and you will enjoy much more freedom!
