Ask anyone and they would tell you that there have been some bumps in the road that they have had to overcome. No one person’s life is ever easy. There will always be obstacles and challenges. But, in general, life probably is pretty okay for them.
Now, for those of us who have chronic illnesses, the difficulty increases exponentially. And, if those illnesses are invisible to the outside world, then it becomes an impossible burden to lay down.
All anyone in the world wants is to be accepted, embraced, validated and loved. Everyone yearns to be understood. Could you imagine how it feels to be sick nearly every day but hardly ever look it? To be crippled by pain but it goes unnoticed? To endure the mental pain brought on by the physical? This is the life of a person with an invisible illness. And more times than not, it’s more than one.
What is my life like?
Well, I’ve become pretty good at being efficient even though I’m in a lot of pain. That comes from learning to live with pain from a young age. Being a kid with migraine disease isn’t easy. I had to deal with speculation from teachers and classmates. My pain wasn’t frequently validated and I felt like not many cared or believed me. So, I learned to stop seeking for that understanding or caring.
I dealt with my pain on my own, and since life was going to continue regardless of how bad I was hurting, I had to pick myself up and push through the pain. I have become quite good at it. I learned that not many people cared that my head hurt a lot. The work was still expected of me and I had to deliver.
I had projected this expectation onto myself in the areas of motherhood and wife. Being a mother is my greatest accomplishment and I take my role very seriously. There’s no excuse to not be a good mother; not even blinding, c rippling, disabling pain. So I have gone on field trips, to Girl Scout meetings, sat through plays and concerts, picked kids up and dropped kids off, and more while in pain. My duties as a mother don’t go away just because I have a migraine. There are appointments, projects, homework, birthday parties, school functions, and after school activities. September through June is the toughest part of the year.
When the pain is invisible
Migraine disease is a horrible disease to have by itself, but it rarely travels alone. I also have Major Depression Disorder (MDD), General Anxiety Disorder (GAD), Chronic Daily Headache (CDH), Chronic Migraine (CM), and Fibromyalgia. None of these diseases and disorders are visible to the naked eye.
They are neatly packaged and concealed underneath my skin. They actively try to destroy my body and my mind under the cover of darkness. I wish everyone could see how horrible it gets. I don’t use a wheelchair, walker or a cane but my fibromyalgia makes it almost impossible to walk at times. I can’t tolerate fluorescent lighting but I don’t have special accommodations for my photophobia when I go shopping. I can’t eat certain foods but no one classifies any of them as dangerous to migraineurs. I can’t go outside during extreme heat and humidity but no one cautions migraineurs to stay in an air conditioned room on the news. There are no ad campa igns, walks, or awareness events for migraine disease.
And then there is mental illness. . .
Dealing with mental illness is another challenge. It is still considered taboo to talk about it and the stigma still exists about mental illness meaning a person is psychotic. No one wants anyone making them feel crazy because they are depressed, bi-polar or have an anxiety disorder. Once someone knows you suffer from a mental illness you are treated differently, so we keep that illness close to the chest.
We only divulge our struggles with them to other people who have a mental illness(es), our therapists and psychiatrists, and maybe some family members or friends. No one goes blurting out, “Hey! I had suicidal thoughts last night!” or “I’m so depressed that I didn’t get out bed for a week.”. Having society be so ignorant of mental illness makes dealing with it that much harder.
And then fibromyalgia
Now, thanks to my nervous system being extremely sensitive and always on, I developed fibromyalgia. The simplest way to describe my fibromyalgia is that it feels like I have rheumatoid arthritis in all of my joints except it doesn’t disfigure me and the pain is really coming from my overactive nerves. It gets really bad whenever rain is in the forecast. My wrists, fingers, ankles and feet hurt regularly because I have to use them everyday.
Walking and driving and typing and writing are painful tasks for me now. I need to pace myself or I wind up getting very bad dizzy spells. I can’t clean my bathroom or wash dishes without being in pain. Even cooking has become an issue. All of these limitations are depressing. And based on my external appearance no one could ever guess that this is the life that I live.
Every day is a challenge, but it is also. . .
It is also an opportunity to educate. I use my illnesses as a platform to dispel false statements and stigmas and to make more people aware of what a chronic invisible illness is. People like me have to fight to be heard and recognized by many different arenas of people–family, friends, coworkers, doctors and nurses.
Advocating for oneself is very difficult to do, especially when you are constantly being beaten down by your illness(es). It’s important for me to people to see us. I make my illnesses visible through my words making it tangible to those who don’t understand it. All we want is compassion, recognition and understanding. Hopefully this isn’t a goal too hard to achieve.
Jaime Sanders is 34 years old and lives with her husband of nearly 15 years and three children. She was first diagnosed with having Migraine disease at the age of eight. As an adult, Jaime’s migraines became chronic. In 2009, she was also diagnosed with having chronic migraine and chronic daily headache. Jaime also suffers from depression and anxiety and was diagnosed with fibromyalgia last year. It is important for her to spread awareness about Migraine and chronic migraine, which she does using her blog, Migraine: Living in Pain (http://migraine-livinginpain.blogspot.com ).