The Importance of a Multiple Sclerosis Online Community
MS is about so much more than two letters, an MRI and needles.
It’s about families; it’s about working together; it’s about forging new relationships; it’s about getting to know yourself better and getting to know your community better.
Each of us in the MS community uses our resources to improve the community as a whole. For some of us that means being the doctor, nurse practitioner, physician’s assistant, nurse or therapist. For others that means being the friends, family and loved ones of a person diagnosed with MS. For others that means being the care partner or significant other and then most importantly there is the person diagnosed with MS.
Notice that I did not write MS “patient.” Although ‘patience’ is a virtue, being a patient is not always so enjoyable. Being diagnosed with MS does not make someone more sick or feeble than the rest of the population. Yes, MS is a neurologic condition requiring lifetime treatments, but one in five Americans has a chronic condition requiring treatment as well. Nobody’s health is perfect and there are often circumstances which we cannot control, but we can ensure that the MS “patient” remains the center of the MS Team. This principle is the foundation of the Multiple Sclerosis Team Approach Rule (M*STAR).
One of the most frightening aspects of being diagnosed with MS is the idea that you have lost control over aspects of your life. The medications we have do not completely get rid of the risks of MS, and so people with MS often feel anxiety over the diagnosis itself – even without new symptoms.
There is a great need for different members of the MS community to reach out to each other as part of the Multiple Sclerosis Patient Network (M*S*P*N) to lend a helping hand to hold onto during the whirlwind which can surround a diagnosis of MS.
The MS community has networks built up which other diagnoses do not; for instance – headache sufferers. There are 40 million Americans with migraines and 28 million have more than one a month. Yet there is no well developed “migraine community” as there is with MS. It is time for the MS community to recognize how powerful and lucky we all our and to think about ways we can help, not only each other, but other less organized communities as well.
As the candidates for presidency crisscross across the United States and hold town meetings and fireside chats, it is important for them to realize that this dialogue should end with the November elections, but should continue so that we can improve the quality of life of all Americans.
Once the president takes office, we need to see a continuation of our national discussion on issues such as chronic diagnoses and how we can make America more accessible to everyone – not just in terms of ramps, but also in terms of ensuring that jobs and transportation are available.
The MS community, with its great diversity, can and should lead the way in ensuring that these issues remain important priorities on a local, states and federal level.