EDITOR’S NOTE: This is the first of two columns by Linda Joy Parsons, of Lima, on chronic illness. The second column will be published Saturday.
Dear Chronic Illness Patient:
We probably do not know one another personally, but we have something in common that binds us to one another: a chronic illness. You battle your body each and every day, as do I mine. You don’t trust your body, and neither do I. You do all you can just to keep your body working, and well as I. You spend much of your time in a doctor’s office or hospital, as I do. You spend as much time sorting pills as you do sorting laundry. I do the same. You get frustrated and feel hopeless much of the time. So do I. You wish your life could be different. I have the same wish. You dream of better days. I have the same dream.
Maybe we have passed one another on the street, or on gurneys in a hospital hallway. Perhaps we have chatted on an online support group’s forum. It’s probable we have had no chance meetings or interactions whatsoever. But, we still have our connection, as negative as it is, that encourages me to want to reach out to you in this letter, stranger to stranger, but struggling heart to struggling heart.
When I first became ill, I declared myself “dead,” until my body decided to work properly again. For months, I sat, not doing much of anything, really, except seeing doctors, trying meds, allowing tests, and waiting for that day I would wake up, “me” again. Months turned into years. The day finally came when my mind agreed with my body that “chronically ill” was my new norm, and I had to learn to adjust to this new me.
What did that mean?
For starters, it meant seeing myself as whole, regardless of the parts that didn’t work right, or just plain didn’t work at all. And, it meant seeing that I still had much to give to others. I couldn’t stand before a classroom any longer, or sing in a choir, or give a party, because my body said I couldn’t, but my mind was shouting, “I’m here, I’m here, use me, use me!” Once the drone of my body’s dysfunctional cries softened, I finally heard my mind’s generous offering, and that’s when my life changed.
My mother actually was an impetus to change for me during that time. She’s the one who told me to listen to my head, and heart, and move on past my body’s failings. Thank you, Mom, for being a stronger voice than my pain, which can be difficult to be in the world of illness.
So, what was I to do, in a body that was dysfunctional, but with a mind that still worked? I turned to the Internet for clues. What I found was Facebook, a world of social interaction that could either be flippant and valueless, or seriously life altering and valuable. I chose the latter.
I joined a few support groups and began interacting with those who shared, not only my physical struggles, but my emotional struggles, as well. What I found myself doing, though, which I hadn’t done in years (who wants support from a broken doll?), was reaching out to those with questions and in pain. I found I had many answers, accumulated during my years of swimming through the medical world, and compassion, for these poor souls who were my very reflection. I had come home.
After some time on others’ groups, I started my own. I now have three groups, but one stands out in my mind, and heart, as I truly believe in its “mission,” and what I want it to do: Potsy Paradise, a place where people with illness can go, to be more than their illness. Why? Because we are!
So many people scoff at Facebook, that Facebook friends aren’t real friends, that the social medium truly serves no significant purpose. For those with a chronic illness, I challenge these thoughts, because, for those with chronic illnesses, with social limitations, Facebook may be all we have. It’s that important.
On the group, Potsy Paradise, all members either have a chronic illness, or they care for someone who does. On Potsy Paradise, we don’t talk about those illnesses. What we do talk about is who we are ASIDE from those illnesses, because we are so much more than our struggles. We are our hopes, dreams, accomplishments and experiences. We are our own voices of knowledge that we can still share in an attempt to make a difference in the lives of others. We are still us. Our bodies may be broken, but we are still who we were, just in a different vehicle. We can still make a difference in this world. We can still contribute to our families, communities, and even to ourselves. We are still valuable.
And, in encouraging you to know that you still have worth, please take that to heart and use that when interacting in the world we have, unfortunately, found ourselves immersed in: the medical world.
Please, keep in mind, you are the one responsible for your health. When we reach out to the medical community, we are doing so with the knowledge and understanding that those who reach back, the doctors, nurses, techs, are only our partners in our search for a healthier existence. They do not take over as sole proprietors over our bodies and minds. No. We still have ownership and responsibility over what is ours, like it or not.
Thus, we must help our doctors to help us. We must learn about our illnesses and their symptoms, the medications that we take and their side effects, the alternative treatments available to us and their risks, what emotional support is available to us and pursue it. We must be partners with our doctors. That is not only our responsibility in our relationship with our doctors, but our duty to our very selves.
Once you see that you still have value, and once you have learned all you can about your condition, partner with your doctor. It is only through self-value and respect that we, those who live with chronic illness, may continue to believe in the hope that will carry us through.