I Have MS. Can You See Me?
Last updated: April 2022
People with disabilities face many obstacles. Some are physical while others are social. Perhaps you used to jog or surf or play tennis, but you are no longer able to enjoy those activities. Maybe you lost a friend or two after your diagnosis because you can no longer do some fun things with them.
Or, you might have taken a hit in the self-esteem department because you no longer feel like a whole person. All of the above might lead those of us with MS to feel invisible.
If you have not experienced any of this, you are indeed lucky. If you have endured and overcome any of these experiences, you should be commended. You are a stronger person for it.
But the past year has revealed that many MS patients have something in common that we must work to change.
The immunocompromised are invisible to many
There are 2.8 million people worldwide who are living with MS, an increase from 2.3 million in 2013. This is according to the Atlas of MS, the most comprehensive global study of the epidemiology of MS.1
There are nine FDA-approved injectable MS medications, ten oral medications, and four infused medications. While some patients have opted not to take a disease-modifying drug, many have chosen to take advantage of the wide choice of medications that manage T-cells or B-cells or otherwise suppress a patient’s immune system.2
MS and COVID-19 immunization
For those with compromised immune systems, it means that COVID-19 has presented unique challenges. The vaccines that we have received do not guarantee full protection for healthy persons, and they may provide little protection for those with suppressed immunity.
But nobody is talking about us.
The media doesn’t see us
The cultural debates surrounding the vaccine and mask mandates seldom invoke the rights and interests of MS patients and many others with weakened immune systems. Those who refuse to wear masks or take a vaccine should at least be aware that the spread of the coronavirus relegates those with compromised immune systems to stay-at-home status.
The media trots out a predictable roster of medical experts to discuss the latest variants and coronavirus trends. It will continue doing this as the virus mutates and remains with us in one form or another. But where are the immune system experts who can tell our story? The media has not called upon them to speak. Nor have they reached out to the national MS or cancer or other organizations for experts who can tell our story.
Organizations must reach out to the media
Organizations dedicated to the welfare of MS patients, cancer patients, and others with compromised immune systems need to spread the word that vaccines and masking help us. The American media have practically closed the book on the pandemic without providing a platform for those advocating for people who still cannot safely enter restaurants, theatres, and other public places.
By excluding the voices of these individuals, the media has made them feel invisible. As if they don’t matter. It is another unfortunate by-product of these challenging times.
National organizations need to contact the physicians and experts who appear on news programs and are quoted in the press. If they know our story, they are more likely to tell it.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: