Awareness

Awareness

Awareness (noun)
knowledge or perception of a situation or fact

Speaking out about multiple sclerosis to others who may be dealing with this disease is actually helpful to me as well as, I hope, to others. It builds community, helps bring awareness to MS, and strengthens the MS movement that will ultimately lead to the end of this disease. – Teri Garr

March is Multiple Sclerosis Awareness Month. I like to say that MS is not all, but rather a part of me just like anything else. But like Teri Garr, I do feel like being able to talk about living with MS helps me, and hopefully others to understand the disease.

Some facts about MS that you can use to help others understand

2.3m people around the world are said to be living with MS, and 400,000 of those in the    U.S., though most people believe that the number is likely closer to 1m in the U.S. and  double the former figure world-wide. Unlike communicable diseases, MS is not required to be reported, so we have to rely on rigged insurance reporting and databases that we know aren’t accurate. And accurate reporting = more funding for research and a cure.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central    nervous system (brain and spinal cord). Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

MS is thought to be an immune-mediated disease in which the body’s immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the central nervous system.

The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted.

MS is not contagious

There is no cure for MS

People with MS tend to live, on average, 7 to 10 years less than someone without it, though they say you don’t die from MS, but rather complications of it. And have 10 years less of employment due to physical impairment.

People with MS are twice as likely to be underemployed, underinsured, and food insecure. The treatments and meds to manage the disease are extremely expensive, and “budgeting” for a relapse is impossible.

Your help can ease the burden for people living with MS. If you can’t donate money, small things like helping a friend preserve their energy, by offering to clean their house or do the laundry, is greatly appreciated (I surely wouldn’t turn it down!). Or if you can, offer to employ people living with MS. Most of us are still highly contributing members of society. We are not our disease, but rather people living with one.

Stigma

Stigma concept.

Stigma (noun)
Medicine/Medical – a mental or physical mark that is characteristic of a defect or disease

I’ve been thinking about stigma through most of my career in healthcare communications. Having worked across just about every disease and disorder category you can think of, one of the things we’re often tasked with doing is to help “dispel” stigma around living with diseases. What I’ve learned during the 20 years in this area is that the only people who can truly smash a stigma on its head is someone living with that disease or disorder.

Now herein lies one of the problems with trying to do away with stigma, you have to talk about it publicly. It needs a face. People need to know that stigma is their partner, child, brother, sister, cousin, best friend. Whether it’s with close family and friends or on a broader platform. And in the U.S. at least, if you come out on that broader platform you potentially put your career in jeopardy. I deal with stigma every day whether someone knows I have MS or not. Stigma is all around us. In the media, online, in conversations. Our society favors the able bodied, fit, person.

I’ve seen people in wheelchairs talked over as if the person doing the talking automatically assumes said person in the wheelchair has brain damage and couldn’t possibly understand them. Or better, they shout at them. Now I’m sure I’ve been guilty of this somewhere in my life, but being diagnosed with a neurological disease magnifies those societal blips.

I have a unique story. If anyone has heard the actual way I received confirmation of my diagnosis, they know. It was funny in the moment, and it’s funny now. Combining my experience with living with MS and working in healthcare, I have attained the necessary skills to be able to help people who come after me. BUT I haven’t been able to be nearly as open as I would like due to the fear of said story-telling having a negative impact on me professionally.

Clearly my brain works, no really, it does. And in the past I have gladly accepted that even when I’ve gone through the worst of my flare-ups I can handle doing more professionally and personally then someone without MS. That said, even working in healthcare I couldn’t come out to my managers. There’s that silly stigma again. The idea that I would be looked at as less than if I made a mistake. And most times if I do make a mistake it has absolutely nothing to do with the MS. And if it does, it’s because I’ve worked too many hours and am incredibly fatigued. Under those circumstances everyone makes mistakes.

Another area of stigma surrounds mental health. For reasons unbeknownst to me we don’t treat emotional well-being as importantly as physical. And more often that not, issues with mental health are in fact physical. I don’t know too many people who would ignore having diabetes or cancer. So why do we ignore our mental health? Stigma!

People close to me know I am a total Britophile and eagerly watched Will and Kate get married, awaited both babies with baited breath and have now watched Harry come into this own. Over the last 24 hours he has given interviews detailing that he needed to seek therapy for depression. Remember when he was caught naked in Vegas? Or coming out of clubs in the wee hours? He never fully dealt with the death of his mum and his brother lovingly told him he needed help. When someone of his visibility comes out, especially in the English culture of keep calm carry on, many others feel they can as well.

One of the symptoms of MS is depression. And along with all of the meds to treat the disease and symptoms comes depression. And then you have a flare-up and you’re depressed about that! And then you’re depressed coming off of all of the meds. Screw serotonin! The depression I’d always experienced was either situational or related to being on treatment and follow-up for a flare-up. Until the end of November.

I came home from a grueling day of work and was just spiraling. I stood in my living room feeling as though I needed to head across town to the emergency room where I used to work. I could not stop ruminating. Fortunately a good friend, long distance, over instant message talked me through it. Given this was the first experience I had like this not related directly to meds, I knew medical intervention was a must. This was a Thursday night and Friday I had an appointment with my neurologist for the following Monday. A few days later I started on Zoloft. Hey stigma, how you doin’? Now how can something be a stigma when more than 15 million American adults are living with it?

Those first weeks the nausea was, well,  nauseating. One Saturday night after being out I was wandering the streets at midnight looking for Emetrol for the nausea.

I kept wondering when it was going to “kick in” harkening back to college days. Another friend assured me that I wouldn’t be turning purple or growing a unicorn horn, but that I would “just know.” Part of my fear of new meds is side effects. I would wreck any clinical trial I tried to participate in because I’m the person who gets the side effects. I get side effects no doctor has ever seen before. I’m that person.

Probably about a month into taking it, I started to feel happy. And I mean nauseatingly happy. Like the kind of happy my friends and I would make fun of. Full disclosure, I also started working out every day coinciding with taking the medicine. Fast forward several months and while yes, some say it’s a magic pill (I don’t disagree), but I was also ready for a change. And honestly, it feels GOOD to wake up happy each day. It’s allowed me to tackle something professionally I’ve wanted to do for years (saving that for another post). It’s afforded me the opportunity to start this blog and has cleared my head of “you’re not good enough” and imposter syndrome and most importantly not spending my days hating myself.

I’d like to think this is my little piece of helping to end stigma.