Often a patient either feels, or is treated, as if it is "all in their head". Maybe they are treated as a hypochondriac. This just is not the case. I guess living this is what caused my unhappiness with how this movie portrayed things. Having experienced this process, I looked forward to the world, or hell, even my family and friends, maybe understanding how this is.
I hoped, just maybe, people would get a visual of the hell it is living with not only autoimmune disease, but many other chronic pain illnesses. First you go to the doctor hoping for an answer. You do this for months, years even. In my case, twenty years. The doctors either are not informed, or don't believe your symptoms. You get told to be fit and active, eat better, and my favorite, you are just depressed. They try a medley of drugs, like anti-psychotics, anti-depressants, pain pills, and more. If you are lucky, you find the right doctor that diagnoses you.
The symptoms are all over the place. After you find a doctor, then comes work, family, and friends. Work will not accommodate your endless and changing disabilities. Many of these diseases are progressive. Some come in cycles. Your friends and family, well let's say they are the least understanding. They say they do understand, but about 25%, in total, of them really, truly do. Those rare ones will love you and support. The rest, not so much. They think you are lazy, or making an excuse. They cannot handle if you have a mood swing from medicines, or just plain lack of sleep and constant pain. Pain, yeah, let's talk about that. All day, every day. Some days better than others. Some days you cannot even function, mentally physically, or both. They get tired of helping, they get tired of you. Spouses, that's the hardest to maintain. They live these symptoms with you. Sometimes, it is just too much for them.
That brings me to the movie again. It is rare for anyone to get diagnosed that easily, or quickly. It is rare to have the support of any of the groups, work, family, friends, doctors. Let alone, ALL of them. It is HELL. It is LONG TERM. It is the tip of the iceberg in this movie. Yes, it brings light to the illness. Yes, it shows some of what you may experience. However, it does not come close to the fear, pain, uncertainty, loneliness, despair, emotions, being an experiment, being a human pin cushion, the financial stress, and I could go on and on. I believe you have the point though.
I live with Fibromyalgia, Chronic Pain Syndrome, MS, Chronic Migraine, Hypopituitarism, and just plain getting older. What I want to leave you with is this... LOVE that person with illness and disease. BELIEVE that person. SUPPORT that person. ENABLE that person. EMPOWER that person. ENCOURAGE that person. They can be so much more with those things. Most of all, have PATIENCE and UNDERSTANDING.
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