Fibromyalgia/CFS: The Frustrating Invisible Illness
If you were to ask me what the worst part about living with Fibromyalgia and CFS is, I would probably answer with 'frustration'. Not the pain, fatigue, the brain fog or sleepless nights but pure frustration. The nightmare of living with chronic invisible widespread musculoskeletal pain and fatigue that has no cure and no definite proven treatments which is widely misunderstood by society and medical professionals is incredibly frustrating.
I find myself at times feeling isolated by the pain and fatigue because most people cannot relate to being in pain all of the time. Insensitive comments like "but you look so well", "you can't be in that much pain", "you just need to get out more", and "everyone gets tired" add insult to injury. People have a difficult time comprehending the enormity of pain when it doesn't show on the surface. Most people do not understand just how severe Fibromyalgia/CFS can be; they are not familiar with the painful symptoms and limitations of extreme exhaustion which is bone deep. People don't get that one minute you can feel relatively great and the next minute you're hit by a tidal wave of profound pain and exhaustion.
Fibromyalgia/CFS are extremely unpredictable and very frustrating illnesses- it is very difficult to predict whether or not you will have a good or bad day. I often have to cancel plans with friends or call in sick for work because the pain and fatigue suddenly became all too much. Just because I can do something one day doesn't mean that I can manage it the next and when you look like you are capable of being super woman, people just can't grasp the meaning of "chronic" no matter how you try to convey it.
According to Mark Dellegrino, "Fibromyalgia has been called the invisible condition because you can't look at someone and tell if he or she has fibromyalgia." Feelings of hurt and anger set in as sufferers feel that the have to prove that their pain is real. Our pain isn't all in our heads..... it's in our necks, backs, arms, feet.... and.... need I go on? I wouldn't wish what I feel everyday on anybody but sometimes I find myself wishing that the people around me could know what it is like to ache from head to toe 24/7 so that they can know that no matter how much I want to just get over it and move on with my life- I can't. These illnesses completely change everyday life.For those whose lives have been challenged by Fibromyalgia/CFS even a simple outing like a trip to the movies can be a struggle. The pain is at times unspeakable. While some may be able to maintain a relatively normal lifestyle, unfortunately for most sufferers the pain is debilitating, leaving them either bed or house bound, unable to keep up with the demands which accompanies life. Chronic pain, various side effects and a myriad of symptoms are a challenge to manage. Many people afflicted by pain find many activities that most people take for granted so often hard to accomplish and this also inflicts a feeling of frustration.
At my worst I have been totally debilitated by fibromyalgia and CFS/ME- just walking to the letter box can be a challenge and managing everyday tasks have now become an enormous effort. Some days even a simple thing like taking a shower sucks all the energy and life right out of me. Sometimes a short shopping trip can exhaust me and leave me house bound for weeks on end. It's frustrating when you cannot do what you so desperately want to do. My mind really wants to but my body just doesn't follow through. It's frustrating when the limitations of pain and fatigue severely restrict everyday life. Some days I feel as though I'm a 22 year old stuck inside a 70 year old body- it's demoralising.
I have lost so many things in my life because of fibromyalgia/CFS. I've lost my career, relationships, my social life and so many precious, memorable and irreplaceable moments with friends and family that I can't get back. But I have also gained so much. I am learning so many things about myself that I never knew before. I'm learning to be more positive and I have been blessed with wonderful opportunities that I would not have encountered had I been well. Fibromyalgia/CFS may have stolen years of my life but it isn't going to steal it forever. I'm still holding onto hope and I'm dreaming bigger and better than I ever have before.
Today is Fibromyalgia and CFS/ME awareness day and I am writing to raise and maintain awareness in the hope that it can provide comfort for those who feel frustrated, isolated and forgotten. A compassionate heart and an eager listening ear can help ease the heartache of physical pain for those who dream of the day when they can finally return to their former pain free and energetic life.
Article written by Emily Ruth
© chronicallycreative.net, 2011
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