When I was 16, I was diagnosed with a Chiari malformation. This means that part of my brain tissue extends downward into my spinal canal.
When I was younger, I was an out-going, kind person. I showed love and support to whoever needed it. I am now coming up on my twentieth birthday, and while that may still be young in the eyes of most, I am far from the average twenty-year-old. You see, I suffer from a chronic condition known as Chiari Malformation. I have written an article about it here if you would like a longer explanation along with a list of symptoms and treatment options.
In short, I was born with a malformed skull that is too small, causing my brain to herniate through the foramen magnum (opening at the bottom of your skull) crowding my spinal cord, brain stem, and cerebral tonsils. This condition causes a long list of symptoms, that vary from patient to patient, but the worst symptom I have is chronic pain. When I said I am not your average twenty-year-old, I mean I am physical disabled due to this condition. This, as you may have guessed, causes different emotions. At this moment I am angry, and I have been for a long time. Why am I angry, though? That is what I would like to share with you today.
A Lack of Knowledge and Understanding
One of the most common thing that angers me is the general lack of knowledge around my condition in the medical field. While chiari is not rare, 1 in 1,000 people are diagnosed, it is not well known among most primary physicians, neurologists, and neurosurgeons. I actually had to travel to the other side of the state to see a specialist, one of two that are in my state. While driving through the mountains was beautiful, I would rather see a doctor closer to me that understands what is going on with me.
That is not an option, though, so the doctors I see in my city do not understand my condition. When I go to see my primary doctor, that is aware of my diagnosis, she is hesitant to give me any medication that would help my pain. This then leads me to going to the emergency room on "bad days", so once a week if not more. I am often seen as a young pill-popper that is doctor shopping, when in reality I just want something that gives me the ability to have one "normal" hour a day.
There is not much, if any, training done about my condition. Doctors and nurses do not understand that my pain can be rated at a nine with a smile on my face. I go home angry and in more pain because I strained myself going to the hospital.
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The "Well Intentions" of Others
Listen, it's very kind of you to send me a link to some "alternative" medications. I know you mean well, but some garlic cloves and onions aren't going to take my pain away. Trust me, I've tried everything I can think of to not be dependent on medication, but at this point in time I need real medicine. Telling me that I can overcome my pain and symptoms with nature and a diet does nothing but anger me. If it were that simple, I would be doing it. Sending me articles about how dangerous prescription pain pills are tends to make me think you believe I am taking these pills for fun. I am not.
Thank you for trying, but if you'd really like to help me, bring me easy to make or already made food. Help me go grocery shopping. Talk to me, try to understand what is going on. That is the kind of support I need right now.
I Am Constantly in Pain
Some days are worse than others, but no day goes without pain. This point is my last, because while I could go on for pages- this point ties everything together.
Something I have noticed is doctors do not seem to understand that their one through ten pain scale applies differently to everyone, but especially those who have lived with chronic pain for a while. My "seven out of ten" is comparable to a healthy persons "eleven out of ten" for the simple fact that I have gotten use to the good days. I know the pain is there, and I can feel it, but I've given up trying to save my energy on good days. Reason being, I know after good days I have weeks of bad ones. I have lengths of time where getting out of bed is the only thing I can do that day. There are days where eating hurts, because the act of chewing and swallowing takes too much energy. Plus, it's not like I'm ever able to keep food down anyway.
I've learned to control my anger on the good days. I am able to hold my tongue and act like a relatively normal person. On the days where my pain is at it's worst, I cannot. I can't hold my tongue and I lash out at anyone. I tend to stay away from everyone on the bad days, I don't like getting angry with people and I try my hardest to keep a positive attitude.
I have come to accept the fact that I will never be the person I was before my symptoms worsened. I use to be an out-going, kind person. Right now, I am angry and I have been for a long time. I am sorry. I am working through it. I do not want to be angry at the world and everyone in it. Please understand I am not trying to be mean, but my chronic illness has turned me into an angry person for the sole fact that I am unable to cope with the constant fluctuations of pain I experience every single day of my life. My chronic illness has made me feel many different things in my life, and this is just another stage of accepting my diagnosis.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.