How serious is my chronic illness?

February 25, 2013

This past week, I have learned that several people I know have cancer. Cancer is a horrible disease that most of us have witnessed in some capacity. It can be painful, deliberating, expensive, draining (emotionally and physically) and potentially deadly. We wish and pray that this disease finds a cure.

While learning of the cancer diagnosis for people I care about, it has brought about a lot of personal emotions for me to process. Having any chronic illness and going through the process of discovery of what it is, the prognosis, and treatments is difficult. At times we have hope for what the future can bring through this new illness, and at other times the future looks bleak. Having people around for support and love can make all the difference. It gives us a degree of connection, though we might still feel alone in the journey.

When I first began having fibromyalgia symptoms, I blew it off as an extension of an illness. I thought eventually I would regain my strength, and the tingling sensations were just a weird manifestation of an infection of some sort. Emotionally I was dealing with some personal issues, that seemed to be leading me into a dark place. I wondered if the stress was taking its toll upon my body.

After several months, and having pain that was moving into the 6-7 pain scale, it was time to see a doctor. I could no longer ignore what was going on, and the constant lying around was becoming problematic. Summer ended, and laying on the couch wasn’t as fun as laying in a baby pool with my kids.

Those early days of diagnostic testing and medication experiments were tiresome. I can remember the fear I felt as I went through the process of searching out potential diseases I could have. Each test brought different possibilities. At the beginning, I can remember hearing and dreading the word fibromyalgia. I hated this word, because it seemed to imply more mental issues and unclarity than other diseases, especially since it appeared to be more of a “we don’t know” diagnosis. As I had more tests, and realized the possibility of something deadly, I began to care less. I remember sitting in the doctor’s office having an echogram (I think that’s the name) where they were searching for a heart infection, and the technician was explaining that if they found an infection, it would need to be treated right away, or I could die. I felt relieved later, to discover that I had no infection in my heart, and became more open to any possibility, even if it was more in my head.

I can understand more clearly how fibromyalgia is an invisible disease. Though I have received great support over the years, especially in the early stages, in general this has subsided. I know people care, yet few people understand. I feel a battle inside of finding the balance of keeping it alive (this is what Fibro looks like), and living my life in my own personal fibro bubble. Because I look and act “normal”, even the people closest to me forget my pain and fatigue. Occasionally someone will add a reflection that shows an understanding of my illness to the situation at hand. I feel blessed and loved when those connections are made.

I cannot imagine fully the impact of having cancer. I live with a chronic illness, and have watched my mother die from tongue cancer and my sister-in-law survive cancer but have not experienced it myself. No matter how difficult my days are, I realize that this disease will not take me away from my loved ones. I may have to watch for other symptoms (such as depression) that could shorten my life, yet the core symptoms of fibromyalgia won’t do this. Cancer doesn’t necessarily mean a death sentence. Most people with cancer, actually live a long life. However, the fear of death is greater because the potential is there.

I hope and pray that I can be a support to others in their experience with a chronic illness and/or disease. I admit, at times it is hard for me, because I can long for the support and love that can come from people with a more serious illness. As with any difficult challenge, it is important that I recognize how people care, even when it may not be so evident in the way I desire. I still have people ask me how I am, years later – the love is there. May I be able to offer the best of what was given to me.

None of us know what it is that lies ahead for us. Our life is filled with both amazing blessings, and horrific challenges. The medical world can try to simplify and provide better treatment through diagnosis and statistics. However, regardless of what it might appear to be, the mystery remains. May I find a way to love and be loved in the mystery.

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The Fibromyalgia Diagnosis

October 4, 2011

For six years I have lived with chronic pain and fatigue without having a clear diagnosis.  Different doctors had different ideas of the cause or possible diagnosis such as fibromyalgia, peripheral neuropathy and/or myofascial pain.  Various testing was used to look for abnormal blood work or physical characteristics as well as medications they might determine swelling or other problems.    The continuous normal results brought about a greater focus on pain management and less on the potential cause of the problems. 

Having a firm diagnosis didn’t seem to be an issue as my actions would be the same regardless of the label.  I found it helpful to put a limit on my search for a cause, as my doctors were diligent in helping me reduce my symptoms.  I would continue to do research, exercise and try alternative treatments along with medication adaptations as needed.  Even though it wasn’t clear what I had, I did a lot of reading on fibromyalgia, chronic fatigue, myofascial pain, MS, and Lyme’s disease as it would increase my knowledge of coping skills and treatment possibilities for various symptoms/diseases.   

My identity of being someone with chronic pain felt inadequate.  Chronic pain is a very widespread problem with a great deal of variation.   It felt simpler to speak of my chronic back pain, as this was my greatest symptom and where I often needed the most adaptation.  However the fatigue and widespread body pain also contributed to some drastic life changes.    Pain is very subjective, so it could leave me and others wondering if my perception of my pain level was over exaggerated. 

Having a diagnosis is necessary for receiving services and treatment.  In our society, the doctor’s diagnosis is crucial for all kinds of services.  For disability applications, employment services, medication, and treatment, people want to know the cause and have it verified by a doctor.  My doctors have always been good about sending the necessary information and reports for my medical treatment, so I never checked into what specifically was being communicated.  As I began to seek outside services, such as employment and legal protection, I found I needed to verify the diagnostic label, if there was one, for my symptoms.  Surprisingly, doctors don’t always communicate this information.    

For years, I was diagnosed with Fibromyalgia in my medical chart.  I have heard of this possibility many times by different doctors, but never had it confirmed as my diagnosis.  In my mind, and that of many others, this is a difficult diagnosis because of its variations and often “normal” lab work.  Though I could see I met the criteria, I didn’t like the psychological stigma it also carried.  Initially I was extremely resistant to considering this a possibility, as I was looking for something I felt was more concrete.  As time went my I became more open, and found I would prefer this “club” to the “chronic pain club” as it represented my struggles much more accurately. 

In many ways I feel as if I have a new identity that I haven’t quite integrated yet.  I find myself hesitant to say “I have fibromyalgia” and realize that I still have shame over my own symptoms that I see as inadequacies.  I also feel a degree of relief because of the support of my doctor, and having a label that can help me receive further support.  This gives me a greater sense of community as the fibromyalgia organizations and support groups are numerous.   Having fibromyalgia is part of who I am, yet it isn’t the complete picture.  My assets, strengths and abilities haven’t changed because of this disease or because of my diagnosis. 

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.  You must do the thing which you think you cannot do,” (Eleanor Roosevelt).  Today, I will take rest in the assurance that having a diagnosis will guide me in taking steps to a forward focused on what I can do.  

Elissa


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