I was diagnosed with ankylosing spondylitis in December of 2015, at the time I was 25 years old. I survived five excruciating years of debilitating pain and illness before I made the decision to travel over 1,160 miles from home in search of an answer. As for many others with AS, my history with the disease has not been a walk through the park. I experienced a wide array of symptoms which were not recognized as complications of ankylosing spondylitis. I was tossed back and forth from neurologists to rheumatologists, each stating there was no physical evidence I had anything wrong with me.
When it comes to chronically ill, undiagnosed individuals, typically doctors want no involvement. They discount themselves, assuming some other professional before them should have found the cause. In my case, the delay of diagnosis came from doctor’s appointments. From my experiences, a routine doctor appointment entailed the doctors head in their computer 90% of the visit, playing telephone with care providers via online health portals. Each transcription written by health providers on my online account distorted the facts of my well-being. Countless visits, doctors have paid more attention to rushed, written perceptions in my account, over what I was explaining to them in person. This created a vicious cycle of nothing being resolved for years.
I have racked up thousands of dollars of debt from routine visits, procedures, and medications over the years. Bill collectors have bounties placed on me. I’ve poured thousands, upon thousands of my hard-earned income into the pockets of mighty insurance companies, for no answers and sour attitudes from health care providers, in most cases leading to denial of treatment. There is nothing more aggravating than to feel forever depleted of all energy regardless of how much rest, to be in agony every single day, and to have nobody believe you. I have forgotten what it feels like to be comfortable within my own skin. For an outsider who has never suffered from chronic illness, this is not an easy concept to comprehend. Even many doctors are quick to judge a person solely off appearance, dismissing what they can’t see. As if physically being alive, and young is proof to others that nothing serious could possibly be wrong.
The reality for chronically ill individuals with invisible conditions is that once one doctor passes you on to the next, to the next, the less likely the individual will be taken seriously. Doctor’s immediately put up a wall once they hear how many physicians I’ve seen. In an effort to find a specialist who recognized my symptoms, I was treated as if being in a doctor’s office, asking for help was shameful. If I had the slightest tone of irritation in my voice after a doctor talked down to me, referring to me as a drug seeker and a doctor hopper, the doctors took this as validation of their opinion, that I was only there for drugs.
Most doctors want symptoms to be by the book for them to treat any condition, and don’t have much time to do research of their own. For example; rheumatoid arthritis requires inflammation markers, multiple sclerosis will have visible lesions visible on MRI’S. When it comes to seronegative spondyloarthropathies, health care professionals are not on the same page. I had numerous rheumatologists tell me after receiving my diagnosis from Mayo Clinic, that I did not have AS because it requires testing positive for the gene HLA-B27. Concluding there was no physical evidence so nothing was wrong. Most imaging I’ve had in the past, radiologist’s ignored noting inflammation in my sacroiliac joints and degeneration of my spine on the reports. Typically doctors rely on the radiologists notes and never view the actual images themselves. I had many doctors tell me they don’t know how to read imaging, or it was not entailed in their job description.
This is not to say that all doctors are terrible. From my experiences visiting nearly every rheumatologist, neurologist, and various health care professionals in my area, I have learned there is a serve lack of awareness of rheumatic diseases, and the correlation between autoimmune disturbances. Each time a rheumatologist cleared me of not having a rheumatic problem, I was advised to pack up all my other problems to be addressed elsewhere. Many of us with living with AS realize there are aspects of the disease that relate to autoimmune responses, triggered by the disease process. Often autoimmune deficiencies are neglected from disease criteria and are unheard of by healthcare providers. Some with AS agree that autoimmune and related complications have been the most debilitating aspect of the disease. To shed light on some common complaints reported by hundreds of people with AS, on online discussion boards include; loss of feeling in hands, muscle cramping and spasms, little to no appetite, weight loss, insomnia, depression, heat/cold sensitivity, food sensitivity, redness of skin, rashes, chronic diarrhea, nerve pain, chronic fatigue, memory loss, and poor concentration. Whether the symptoms are underlining disorders, or side effects of common treatment drugs on top of AS, many of us are experiencing similar complications. This is key evidence that physicians need to become aware of.
Surprisingly, there are over 2.7 million Americans currently living with ankylosing spondylitis. AS is more prominent in the United States than lupus, multiple sclerosis, and ALS combined. I selected these diseases in comparison, because if you were to ask an average person what they were, likely one could provide an explanation, or fact about the disease. When someone asks, what is wrong with me and I say ankylosing spondylitis, usually I’m asked to repeat myself three times, then explain what that entails. Even rheumatologists struggle to provide information on the subject. It is time that health care professionals and the public recognize this disease for what it is, not from what they can see. Today my closest doctor is a three-hour commute to NYC. In my opinion this is unacceptable for living in the capital of NY, when you look at the number of cases.
My heart goes out to everyone struggling with an undiagnosed condition. At times the fear of the unknown can be worse than the symptoms alone. I have created this blog to raise awareness to ankylosing spondylitis. No two cases of AS present themselves the same. Often other complications arise due to autoimmune responses caused by the disease process. Doctors should keep an open mind when providing care to an individual with an invisible illness. Looking at me, one wouldn’t imagine the physical difficulties I have overcome. I would like to work with others effected by AS, and delayed diagnosis to promote awareness. You can read my full story leading up to my diagnosis by clicking on My diagnosis story. I encourage feedback and sharing of my story.