Chronic Pain Journals

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.