Family, Friends and Fibro

Some days, it feels like I am walking in the fog.

(c) 2011 LMRNeas

In this post, I will be discussing the pros and cons of a silent illness as it appears with family and friends. Since I cannot speak for every person with a silent illness, I am inviting those who also suffer to add their voices to this post by sharing their stories. When we tell our stories, we help ourselves as well as others.

~~~~

I began having arthritis symptoms as a child, after several bouts of what was then called, "scarletina."  My knees would become hot, swollen, and enflamed. My hands would ache. However, blood tests for rheumatoid arthritis always came back negative. 

I remember being told by family members to "stop pretending" that I was sick.  As a child, when the adults around you don't believe you, it leaves scars that take years to heal.

As I grew older, I would get strep throats so bad that my throat would close. I would be rushed to the hospital for massive doses of penicillin.  I remember one such trip, when I was about ten or 11. I had 500 thousand units of penicillin injected into each thigh. The next day, my throat was normal, my fever gone, but I couldn't walk, because of the bruising in my thigh muscles from the injections.

When I was 17, I finally had my tonsils removed. That is, once my mother proved to the doctors that I had had all the childhood diseases, (except polio and tetanus) which they kept telling her my tonsils would weed out. I had hoped this would be the end of feeling poorly.  But, alas, it wasn't.

I still had painful joints, but now I was told that they were the result of being so active. Growing pains, they would say. I played sports, chased my three younger brothers around, walked everywhere and swam like a fish. I began to ignore the pain. This is something many with silent illnesses learn to do. Pain becomes a constant, and therefore, the new "normal." Only when stress and/or trauma puts a person over the edge does the person with the silent illness recognize the pain, once more.

I guess the best way I can describe how this happens is to compare it to living beside a railroad track. Every day the trains rumble by. At first, the trains disturb the sleep and tranquility of those living there, but after awhile, the person, whose house is beside the tracks, doesn't notice the trains passing. The trains become just so much background noise that simply is. However, set up a jackhammer outside the front door at 6 AM, and it will be the straw that breaks the camel's back.

Pain had become a constant companion by my late teens. I had become adept at smiling through it, not wanting to upset my family or put my friends off.  I would push through, until I would collapse with super high fevers and vague symptoms, which stumped the medical profession. Honestly, if it weren't for the fevers, I believe they would have put me into a phsyciatric ward.  At least, that is how I felt when I would hear the doctors say, "We don't know what is wrong."

As an adult, further issues arose - migraine headaches so severe I would end up in a fetal position; asthmatic symptoms that came and went; sleep issues; "foggy brain" and more joint pain throughout my body. Not until I was in my forties did a doctor put a name to my condition. That name was fibromyalgia. (At the time, fibromyalgia was looked upon as the new "trash can" diagnosis, because many doctors used it to explain problems they couldn't figure out.) 

I had heard of this illness. I had seen people at the hospital, where I was working as a Reiki Master, come in with the diagnosis. I had listened to their list of symptoms, including "fibro fog," and how these symptoms had ruined their lives. Some of the patients I met were completely and legally disabled. So, while the doctor, a leader in the discovery and treatment of this condition, told me I need to "re-think" my life and learn to do things differently, I began swimming up denial, and hoping that this was all a bad dream.

You see, when you are given the diagnosis of a silent illness, something within you dies. You enter a very personal grief that can lead to depression and despair. Gratefully, at the time, I was surrounded by amazing women healers, including my own PCP. Together, they helped me learn to listen to my body, to stop denying the pain, to begin to voice my needs, something I was never good at, and to educate myself on this and other silent illnesses.

Well, finding my voice wasn't easy. Telling people, "No," - people who knew that if they wanted something done, that they could simply ask Linda - didn't go over well. I lost "friends." Some of my family began rolling their eyes the way they did when my mother would complain of being sick or tired or unable to do things. (She had a neuromuscular disease called myasthenia gravis. Myasthenia is another silent illness.) 

I learned to gather those who loved me as I am around me and let go of everyone else. I became more consciencous about exercise. I stop when I feel pain now and don't "push through it." I began working diligently to understand things like, what you put into your body creates your body. In other words, a steady diet of junk food is going to give you a junky body. (If you have chronic illness, this can be deadly.) Fresh fruits and vegetables, especially dark green leafy veggies, help the body to heal. I, also, nuture my emotional and spiritual well-being with books, poems, music, nature and being with those I love.

Today, I still have pain. I have learned to say no, at times, when I really want to say yes. However, I know, full well, that if I say yes, I will get sick. I continue to mourn my inability to leap tall buildings at a single bound, but have come to terms with my limits. Laughter IS the best medicine and I laugh at myself, often.

The most important thing I have learned through all this is that having a strong support system - my loving family and friends, my sisters of the soul, the doctors and healthcare professionals that listen and really hear me, are all key to staying in some semblance of balance.  Without them, I would be on very shaky ground. (Don't get me wrong, I still have times when I push myself, but I am less likely to get into a serious condition, thanks to my support system and my years of "learning" what to do.)

Finally, I will leave you with the advice I received at the wellness clinic where I worked, when I was first diagnosed.  A dear colleague and RN, asked me, out of the blue one day, "Why do you suppose they tell you on a plane to put your oxygen mask on first, before you help others with theirs?"

"Because," I said, looking at her and wondering where she was going with this, "if you don't have your mask on, you can pass out before you get a chance to help others."

Looking me straight in the eyes with all the seriousness of someone attempting to pull a person on the edge of a precipice back to safety, she said, "Exactly! Think about it!"

I did and still do...and I offer a prayer of thanks that she cared that much to help me back from the edge I had no idea I was teetering on.

For further reading, visit:

Suffering in Silence

Invisible Disabilities Association