Disability

With Chronic Illness, The Diagnosis is Only the Beginning

When you are living with debilitating symptoms that nobody can seem to diagnose, all you wish for is an accurate diagnosis. I remember the years I spent thinking, “If I could just get a correct diagnosis everything would be fine.” Well, I’m here to tell you I was wrong. The diagnosis is only the beginning.

Pre-diagnosis was a state of constant frustration and disappointment. It seemed I would never find a doctor who could understand my strange symptoms enough to put a name to it all. Post-diagnosis I feel like I will never stop receiving new and complicated diagnoses. It’s strange how you search eagerly for so long for answers, but when the answers come are you going to be ready for them?

Since I was given my diagnosis of 3-Methylglutaconic Aciduria (3-MGA: a metabolic disorder that disrupts the body’s ability to process protein) in 2014 I have obtained more diagnoses than I can count. Every time I visit a doctor I receive a new one; Neuromuscular Disease, Mitochondrial Disease, Orthostatic Hypotension, Restrictive Lung Disease, Hiatal Hernia, Chronic GERD, Neuritis, Neuralgia, Rediculitis, Tachycardia, Gastric Dismotility, Chronic Edema, etc., are all diagnosed attached to me. All of my diagnoses are a direct result of my very rare metabolic disorder. It seems each year, or each time I have an extensive test, procedure or Illness, I have another strange symptom or my symptoms worsen. It’s an evil cycle of unwellness. 

Some days I think back to before my illness and I remember how carefree I was. The little things I worried about then seem so trivial now. I was free to run and play, work and rest. Now, I am trapped. Trapped in this body that doesn’t match my mind. I wish for those days when I could go out with friends without worry of triggering an “episode”. I long for the times I could go out and enjoy the sun without feeling violently ill. I dream of better days… and then I awake to this lifelong prison sentence of chronic, debilitating illness. 

Having a diagnosis is a blessing and a curse. No doubt, obtaining my diagnosis has led to more support from the medical community. While not many of my doctors fully understand my illness, they are more willing to listen to my concerns and take them seriously now. I am afforded the ability to obtain much needed mobility equipment such as wheelchairs and braces without having to purchase them on my own. I am given credibility with my providers and insurance. However, with these diagnoses I am also given the stress of having to closely monitor my diet, not able to eat the things I enjoy. I am required to live with the loss of multiple body functions. I am forced to live within four walls unless I have an appointment. I am lost in longing for the ability to work, volunteer, and serve others when I am now the one in need of servicing. I am promised a future of disease progression and more loss of function. I am alone in this journey for nobody can truly understand what I experience on a daily basis. I am imprisoned in a body that does not work for me, and left with only the company of my depression and grief. 

So if you are searching for a diagnosis to explain your strange, persistent, ever changing symptoms remember, you must be prepared to live with the answer once it is found. You must remain strong enough to get yourself up every day and tell yourself, “You can do this.” If you lose that strength you will truly be lost in your prison sentence of chronic illness. 

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