I’m 24 years old and have an autoimmune inflammatory disease called Ankylosing Spondylitis. This disease destroys my bones. It is causing me to have severe, painful problems with my teeth and jaw. It has fused together the vertebrate in my lower spine and it causes arthritic flare ups to happen throughout my body.
Needless to say, I am constantly in pain. Some of the time it’s manageable, most times it is not.
Here’s a bit of disease related visual background: I’m six foot two and if you were to see me without knowing me, you would think I looked like your typical drug using scumbag. My teeth are horrible, I’m extremely pale, my spine is hunched, I have no muscle and frankly, it’s embarrassing to be out in public sometimes because of how people treat me.
The teeth, the pale skin, the lack of muscle, these are all direct results from my disease. Yet I am shied away from by the general public. People move their children out of the way when I walk by. It is difficult to make polite conversation anywhere I am. Many people do not look me in the eyes. Often people are surprised if I do them a kind service like opening a door, letting them go before me in a line, or picking up something they have dropped.
I tend to look for opportunities to help people. I believe the reason I do this is for the moment of acceptance. The moment when whoever I can do something for realizes that I am not some white trash drug abusing scumbag.
I guess I hope that people will judge others less harshly if someone who looks like me represents what it means to be a gentleman. It makes me happy when I have the opportunity to show people that I am not what they think that I am.
Currently, I am going through a series of corrective dental surgeries to address the problem with my teeth. Between surgeries, my primary care physician prescribes Norco to get me through the weeks before the next surgery.
In the last few weeks, every healthcare professional I have seen and talked to has treated me like absolute dirt. I’m used to sideways looks and scrutinizing questions, but lately it has been miserable. My dentist, the dental assistant, and the surgeon’s insurance coordinator have all been a part of it. I have been patronized and put down by all of them.
Recently I went into the office and the surgeon prescribed Norco because he had to reschedule the surgery I was supposed to undergo that day. He said it was a lot more serious than he had thought and apologized.
I had asked to speak to him over the phone several times before when I called about the pain, but the woman who answers at the front desk was extremely rude to me every single time. When I went in to ask her a question about the pain management she answered it in a hostile, demeaning tone and then finished with, “By the way, your pharmacist called and told us about your ‘problem.’ I would try a different pharmacy if I were you.”
I was horrified. I didn’t know what to say to her I was so stunned. After a moment of silence I asked her what she meant by that statement and she refused to answer and walked away from me. I felt frustrated, humiliated and hurt. I am in pain. I have the right to have my pain managed. I have the right to be treated with respect.
I immediately called my pharmacy to see what was going on. I asked them to help me figure out who had red flagged me and why and what exactly was said. The way the insurance coordinator had said “problem” I knew she meant “drug problem” and I was determined to get to the bottom of the situation immediately and find out who was slandering me and why.
I had been going to the same pharmacy for over three years. I know everybody there personally and they all assured me that they would never do that to me. They all know my case and if anything ever did concern them, they would call me and talk to me about it.
So I called the insurance coordinator and asked her again what she meant by that statement and who said it. First she said it was potentially “the insurance company” and then she changed her mind and said it was “a pharmacist.” Then she told me it was actually none of my business to know!
I informed her that it is my right to know if I am being flagged for something and to find out where the flag is coming from. She said that she would find out and get back to me. I asked her for her last name and she immediately hung up on me. After that, she refused to take my calls. If another staff member answers, they say that she is on the other line.
If she made up that statement to satisfy her own need to play God in the lives of others, or as some self-righteous judgment on me for my appearance, I won’t stand for it. I am sick of the harassment, slander and emotional abuse I go through just trying to fix my pain. It is people like her who help damage a chronic pain patient’s quality of life.
I am going to live with this awful disease for the rest of my life. I will lodge a complaint with HR, her supervisor, her supervisor’s supervisor and every news reporter that I can get in contact with to have this set straight. And I will continue to do that to every professional who plays God with me because of how I look and what I suffer from. I need freedom from the harassment. I am searching everywhere and begging for help to get the pain management that I need.
This is only one example of my being treated this way. Just because I am in pain does not mean I do not know my rights and will not stand up for them. I am not a second class citizen. I do not deserve this treatment.
I have been hearing horror stories from other people who are in pain. It’s awful because many of these people suffer from diseases that leave no physical trace. They look healthy. People have a hard time believing that they are actually in pain because of this. Mine happens to make me look like a drug addict, which makes it even harder for me to get the help, acceptance and understanding — even from other pain patients. People think I’m just another addict who abuses the system.
I am a gentleman. I am a father. I have a voice. I have rights.
Stephen Nowak lives in Sacramento, California.
National Pain Report invites other readers to share their stories with us.
Send them to email@example.com
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.