I’ve considered writing about this topic in many different ways over the past few months. I’ve started a few drafts, yet I struggled a bit with the most appropriate way to approach this subject. I desire to help others understand the importance of having a positive mental attitude while fighting chronic health conditions, without inadvertently trivializing anyone’s emotional or physical pain. I’ve also sat back and observed and I can’t help but notice the amount of negativity that comes from people who are physically suffering. When I’ve chimed in with my messages of hope and sunshine, I’ve been asked if I even know what its like to live with chronic pain or chronic illness. I initially found this surprising, then realized by the many negative comments and private conversations, that many feel they must appear downtrodden to be taken seriously. After all, living with chronic illness can often mean their conditions are also invisible to the naked eye and because these conditions are also difficult to diagnose, they’ve had much to endure. This showed me the great need for positivity within this group who are living with Invisible Chronic Illness and I set out to share my positive message.
By the way, the answer to that question is yes, I do know what its like to live with invisible chronic illness, as I’ve lived with two chronic conditions since childhood and another that I developed after a horrible car accident a few years back. I have Ankylosing Spondylitis, Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Like most of my fellow sufferers I look fine, and because of my positive and very hopeful outlook on life, on the surface I might also act fine. I’m an eternal optimist and in spite of my difficulties and physical challenges, I’m the type of person who is most likely to see the glass half full, rather than half empty.
Why is this? When like most of you I’ve lived with symptoms of chronic invisible illness for many years, going undiagnosed or being misdiagnosed. I’ve also had my symptoms trivialized or blatantly disregarded by numerous doctors. I’ve had “friends” incapable of understanding why I would have bouts of spontaneous swelling or why I was physically debilitated for 8 months, using a cane & crutches without a single diagnosis. As a teen my mother would tell me that I was being lazy and would force me out of bed at 2am to wash dishes that I couldn’t get to because of fatigue, during what I know now to be AS & CFIDS flares. My mom would also suggest that I was far too young to be tired all of the time and that I needed to “snap” myself out of it. As my conditions progressed, I can recall my husband asking how long I’d plan to be sick, when it came to cooking and cleaning the house, as he sat and watched football. I’m sure that if I asked each of you to list below your many encounters with insensitive people, doctors, friends, strangers, or family members, that the comment section would be full. However, I know the effects of dwelling on the negative and as I recall these situations, I can still tap into the awful feelings that I’d experienced at those precise moments. I also know that as easily as I can focus on the negative, I can also think of many positive situations in my life to draw upon. I can name 20 very supportive friends, at least one doctor who finally listened to me, leading to a correct diagnosis. I can think of a phone conversation with my mom, as I explained the spontaneous swelling that I’d experienced as a child, was the result of AS and the debilitating fatigue I’d also lived with since childhood, was due to Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS/CFS. My husband has since taken over the cooking and cleaning, as I now sit and watch the occasional football game. My friends and family are now my biggest supporters, and I do not harbor resentment toward them because they did not understand invisible chronic Illness. I didn’t even understand it myself and I’d lived with (3) of these conditions for most of my life. I’ve also found great healing in forgiveness and not so much of others, but of myself. Letting go of much of the guilt that comes from being chronically ill. Allowing myself to mourn the loss of the former me and embracing all of who I am today.
Through knowledge I empower myself. I also posses an inner strength and a sense of joy that absolutely no one can steal from me. As my own health advocate I walk into a doctor’s office and I can say with great confidence that I’m looking for someone to partner with me in my health care. I want a doctor who is more knowledgeable about my conditions than I am and sensitive to my needs as a patient and when they are neither, I fire them. That’s right fire them! I recently “fired” my primary care physician after 8 years and I used the term “fired” because Its empowering. She had not been at all helpful in identifying any of the (3) chronic conditions that I have, because she continually trivialized or ignored my symptoms. I even had to demand appointments with specialist, because she would never refer me on her own. On one occasion dragging myself to an Infectious Disease Specialist, simply to prove that I did not have Lyme Disease. However, I had to sever ties, when she blatantly lied about finding a lump in my breast preventing me from receiving the type of mammogram that I needed. I felt this was an attempt on her part to hide her lack of cooperation with me on my many mammogram requests in the past. Now faced with a rather large lump she could have been exposed or worse liable. It was obvious to me that her reputation was of far more importance to her than my health, so, I “fired” her! I asked for a meeting with her boss, which I received, where he apologized on behalf of his department and proceeded to order the mammogram and ultrasound that I needed.
Even from this situation I can find a positive. I’ve gained even more confidence to stand up for myself as a patient. I can share my experiences with others, so that they too can the find their inner strength. I am not a victim of chronic illness and neither are you. As a result, I do not allow the autoimmune disease that I have or the two other invisible illnesses take control of my thinking or to define who I am. I choose to navigate through life with a positive mental attitude and so can you. because it is a choice. I also find great strength in controlling things that are within my ability to control. I exercise daily, I eat healthy, healing foods, I take natural herbs and supplements to give me energy and to help with managing the multitude of symptoms that I encounter. Knowing that stress is a symptom trigger, I keep my stress levels low by resting when needed, meditating, practicing yoga, making sure that I have some “me” time and by being grateful and truly appreciative for all that is right in my life. Being positive does not come at the risk of ignoring the emotional, mental or physical pain, the bad moments in life or the negative situations that we encounter. Life is full of those. Feel free to face those head on, cope with them, feel the anger and the frustration and be ready to stand up for yourself when needed. What’s most important about the negative things that we encounter in our lives, is not the fact that we encounter them, it is how we recover from them and its easiest when we do not allow these moments to consume us, instead allowing ourselves to learn, grow and move on.
Without question each day brings its own challenges, especially when living with chronic pain & invisible chronic illness, but we do have a choice when it comes to being negative ~vs~ being positive. Deciding to have a positive mental attitude not only empowers us, but it gives us the opportunity to see the wonderful things that each day brings.
Another TPP article giving us the why’s and how to’s: “Being Positive when Living with a Chronic Illness”