Woman Strong
Celebrating Women’s Strength on International Women's Day
It has been a while since I wrote about how I felt during my process of waiting for a diagnose, but today's is Women's International Day and after seeing the talented and beautiful actress Selma Blair talk about her struggle with Multiple Sclerosis (MS) during a recent TV interview, I felt compelled to write this blog post. Even though she has been open about her MS diagnosis since October 2017, she finally gave her first television interview a week ago with Good Morning America‘s Robin Roberts.
Of course, I got very emotional while watching the interview, and many things she said resonated with me because they sounded eerily familiar. I went through a similar experience during my diagnosis of Bilateral Hydrops, which ended in a later diagnosis of Ménière’s Disease.
Multiple Sclerosis is a chronic condition, and, just like Meniere's Disease, there's no cure for it. However, for the vast majority of people who suffer from MS, the disease is not fatal. Most of the 2 million people worldwide with MS have a standard life expectancy.
On the other hand, Ménière’s Disease is a long-term progressive disease which damages the balance and hearing parts of the inner ear. Both conditions are extremely challenging and life-changing.
It was sad to see Selma speaking with difficulty due to her spasmodic dysphonia, but it is even sadder (though not surprising) to learn that she had to go through so many doctors telling her that her condition was caused by the stress from being a single mom. Yes, stress plays a big role in the development of many health conditions, but it is not necessarily the cause of the problem. During the interview, she opened up about when she first received the diagnosis after seeking the help of numerous doctors. Selma said that she cried when she finally got the diagnosis. I can definitely relate. When you don't know what's going on, you don't know how to properly treat it.
INVISIBLE SYMPTOMS
Countless times I was told my symptoms were due to depression or anxiety, and that an anti-depressant could fix everything. That is the shortest route to a diagnose, attributing it only to stress. But I knew my 24/7 brain fog, severe migraines, chronic fatigue, inability to move comfortably, unbalance, dizziness, nausea, were not "only in my mind"; my symptoms were very much real. Some of these symptoms are still part of my daily life, especially tinnitus, hyperacusis, and migraines. At some point, some of my doctors thought I was dealing with MS because my chronic fatigue would not let me get out of bed.
I feel blessed to be under the care of great specialists; unfortunately, I also met with some doctors during the diagnose process who were the perfect example of "patient shaming". When I explained my symptoms to them, I got looks as if I was a crazy person and was often ignored when asking certain questions about my condition.
When you have a chronic illness, symptoms don’t present themselves in a normal, continuous setting; you have good days and you also have horrible days where you simply cannot move, nothing seems to alleviate the pain, leaving you hopeless. At times, I felt my brain was under the influence of anesthesia––this is the best way I can describe it. I felt my speech was not flowing and I was moving in slow motion, it was very strange. The severe stage of my condition passed, but I still suffer from debilitating migraines and I am extremely sensitive to sounds, to the point I have to wear earplugs in "normal" settings such as a coffee shop; sometimes I have to leave due to my inability to focus in a noisy environment.
Only those who are by our side every day are able to see the different phases of a chronic illness, the bad and the ugly moments. The sleepless nights, the constant struggle and the agony of not finding the right treatment or a permanent cure. We also celebrate the victories, even if they are tiny signs of progress.
I admire and respect health professionals, and I have been lucky to have found exceptional doctors that were essential to my recovery and for that, I am forever grateful. Nevertheless, we all can relate to the negative experience of feeling rushed out of your doctor appointment or made feel like you are crazy when explaining your symptoms. I personally know many people who go through this often.
BELIEVE WOMEN
I applaud Selma Blair for using her voice to be an advocate of this terrible disease and chronic illnesses. These conditions are real and there are millions of people suffering, especially women. According to the Migraine Research Foundation, women are three times more likely to get migraines than men. Furthermore, Mayo Clinic affirms that 17% of women experience migraines as opposed to 6% of men. Most of the leading migraine and chronic pain advocates are women with only a handful of male counterparts.
Today, I celebrate women, because of our strength and ability to juggle between many tasks, between our professional life and the societal expectations and norms regarding motherhood.
I only hope this message serves as a reminder to always try to be patient and kind. Kindness goes a long way.
I have two requests today. Cherish the women in your life and please donate to science and research initiatives whenever you have the opportunity. We all benefit from advances in science at some point in our lives.
Learn More
To learn more about my story and the organizations and causes I support (and that you can support too), please visit my Hearing Loss Journal and other posts on this Blog Section.
To explore my latest series, inspired by my hearing loss experience, visit The Colors of Sound.
View Available Art
Other Related Links:
Selma Blair shares candid details of her life with MS: What to know about Multiple Sclerosis (MS)
Selma Blair reveals her MS diagnose
Dying to be heard: Why women can have such a hard time getting the medical care they need.