By: Starla Rich
A wise person once stated, “no man is an island.” No matter how strong or independent we desire to be as individuals, the truth is we all need each other, and we are much stronger with others than we are on our own.
Those with debilitating health issues such as is suffered by patients diagnosed with fibromyalgia, know the struggle in maintaining balance and nurturing the various relationships in their lives. Because pain and fatigue are chronic, and emotional swings and bouts of depression are a reality, it becomes easier to simply isolate rather than try and explain what we are going through.
Also, a sense of frustration and guilt over not being “our best” causes us to shy away from asking for help or support. If a fibro sufferer is not careful, we can find ourselves sinking into a dark hole of isolation.
Below is a letter that I have drafted for those I love. Perhaps it can be a guide for you as well to bring understanding and to better provide them the place in your life that many of them want, and that you desire and need.
A Fibromyalgia Letter to Friends and Family
Dear Family and Friends,
I don’t recall the first day things began to change. Looking back, I wonder if I have not suffered this horrible illness my whole life. Those of you who have been around for any length of time, remember some of my struggles with chronic fatigue, digestive and stomach issues, migraines, and more throughout my life.
Looking back, I so wish someone had known about fibromyalgia way back when. How different the journey might’ve been – not just for me, but for all of you who have lovingly walked every step of the way with me!
Thankfully though, I eventually received a diagnosis that allowed me to put a name and a face to the “monster” that haunted me all these years. Taking it out of the shadows did so much for me, personally, to diminish how large it seemed for so, so long.
What Does Fibromyalgia Feel Like?
Early on, I remember days when it hurt even to blow dry my hair. Chronic migraines were only exasperated that excruciating pain. Can you believe that “air” could hurt that much?
I’ve tried to explain what my body feels, but I am sure I had fallen short when you asked about my pain. The only comparison that I could think of was this. The nerve sensitivity and pain are like an electrical cord that has been stripped of the protective coating, and I am feeling the shocking sensation throughout my body.
The sensitivity to touch is like a bear is squeezing me rather than gently hugged by one of you. Please don’t feel that you can’t touch me though. I need it more than you could know. Gentle touch, hugs, lightly massaging my head or shoulders is like medicine and therapy to me. Be patient, please. I know I might cry or wince or pull back, but I need you! If it is too much some days – I am sorry, but don’t give up.
When my condition was in full flare-up in the beginning, it was like laying down on a bed of nails each evening when I tried to sleep. I had to bury myself in pillows – between my ankles, my knees, under my hands and arms, behind my back, tucked under my neck and shoulders. So much for rest on these awful nights of tortured sleep – if you can even say I slept.
Fibromyalgia and Intimacy
Intimacy? Well, all those pillows were not a wall I assure you! The irony is that just like I mentioned the healing power of hugs and touch by all of you, the power of intimacy from a spouse brings relief as well.
I tried to convey that the best I could as a wife. I found so much relief from my headaches and body aches through loving moments and despite what you fear most, I won’t break! Endorphins are better than a shot, and with the reduction of pain and stress, restful sleep is more attainable.