Anyone in the Mito community has no doubt ready about the case of Justina Pelletier, a 15 year old diagnosed with Mitochondrial disease. She was admitted to Boston Children's hospital with a case of the flu and has now been "rediagnosed" with a Somatoform disorder. A somatoform disorder is a case in which the patient has physical symptoms with a psychological cause. I myself have been accused of the same. Justina, a chronically ill child, has been held by the hospital and taken from the custody of her parents for ten months. She is now being held in the hospital's psychiatric unit. The hospital took her off her medications for Mito, so as a result she has only been allowed to become more ill. How medical professionals can refuse to believe that this disease exists makes absolutely no sense. The fact that they are refusing to acknowledge the disease makes me absolutely sick.
Mitochondrial disease is certainly a devastating disease, there are countless babies and children as well as adults who are completely disabled or have lost their lives! From the point of view of a person whose life has been dramatically changed by this disease, it outrages me to see that this is even happening. I myself have been accused of having a somatoform disorder and it's only now that people are figuring out that there really is something to the physical side of my symptoms. I've fought tirelessly for doctors and medical professionals to take my medical condition seriously. To realize that though I may look "just fine" on the outside, there's a battle going on inside my body that no one will know. It's exhausting, and my body only has so much energy to devote to things.
To this day I still deal with medical professionals who are skeptical of my illness. It's one of the worst things I've ever experienced to basically be told that you are crazy by a doctor whom you go to for help. I've been cleared by a psychiatrist at the Mayo Clinic who has said that there is nothing psychologically wrong with me besides anxiety and depression. While it's true that anxiety and depression can bring on somatic symptoms, with me it's a bit different. Most of my depression and anxiety is directly related to my disease and the lack of people taking it seriously. I truly can not explain to you how terrible it feels to have your symptoms ignored by people who are supposed to be there to help you. To see and feel you losing more of yourself and having no one willing to do anything about it. To see your loved ones watch as you only become more ill and they aren't able to do anything about it.
More awareness needs to be raised. This can't happen any more. I think of poor Justina and how scared she must be. My heart goes out to her in a way that only a person who's experienced this devastation (even though it's only a fraction of what she's going through right now) can. I pray that these parents can regain custody of their daughter and she can go back to her loving home. Perhaps this terrible situation will cause people to think twice about treating another family in the same terrible way. I can only pray that this is true. I can only hope...without hope, we have nothing.
This is how we live. This is what we thrive on, HOPE. Hope for better days, hope for more awareness, hope for a cure someday. It's what keeps us going some days. Sometimes, hope seems like all we have. This disease steals so much of you sometimes that you feel almost unrecognizable to yourself and those you love the most.
For myself, I have allowed this disease to steal too much of me. I have become a person I no longer like or recognize. I don't even want to be around myself anymore. But I refuse to let this disease to take any more from me than it already has. I'm broken, and I can't allow myself to be broken any more than I already am. I need to get back to the fun, loving, humorous person I used to be. I wish with all my heart that I hadn't let this happen. I've pushed away the people that mean the most to me and love me the most. The fact is, I'm only human and I have tremendous odds against me. With that being said, I refuse to let Mito win. Eventually it's likely I will lose the battle anyway. I don't know when it will be, and I have hope that it will be a long time from now. If not, I choose to enjoy every moment that I have. It doesn't pay to sit around and wait to die. Life is too precious not to be treasured and enjoyed.
With that being said, I don't want to say that it isn't hard. It's the hardest thing I've ever had to do. But it's a fight worth fighting. I cling to hope, along with the rest of the Mito community.
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