Surviving the "silent illness" "invisible pain"
I have been contemplating since my last post as to where I should go now I have decided that I am going to talk about the pain that I deal with every day of my life for the last 10 years, gradually getting worst. The hardest part of having pain is to get to the root of it, and the biggest part of that is finding the correct dr. and to understand that in some cases it may take multiple drs. before you get answers. The hardest part with pain is to get people to believe you. I have gastroparesis, not a broken arm or a large cut, you can not physically see my pain. The biggest myth about pain, is if you cant see it, it must not be real. Trust me when I say there are a lot more people then you could imagine that live on a daily basis with pain. A lot of people will give up before they can get answers. A lot of times you may be viewed as a pain med seeker, attention seeker, or even psychotic. However, the most important thing to remember is that you and only you know your body.
"silent sickness">> defined as an "internal battle", because for the most part we appear to be normal on the outside but inside we are hurting. Usually hurting in more then one way, physically in pain, and also emotionally in pain. Screaming for help mostly silently because trying to get someone to understand what is going on inside you, can be so emotionally draining, makes you to weak to even continue looking for help. There are a lot of these types of illnesses and because of different factors even people dealing with the same illness may report the pain differently. I'm sure everyone has probably one time or another been asked by the medical profession, rate your pain, a number from 1 to 10, 10 being the worst pain you have ever experienced. Everyone has a different pain tolerance, and everybody's bodies react different. Also, trying to describe your pain to someone, while you are in pain is hard enough and describing it with "a number" is even more difficult.
Before proceeding just a reminder of what gastroparesis is<< is a GI dysmotility condition which doesn't allow for proper motor and nerve function within the digestive tract. So in normal terms, the muscles in my stomach no longer contract resulting in food either sitting in the stomach or not even making it that far. It is very under studied and very misdiagnosed. Reminder from earlier posts they don't know exactly what causes it, however the three main ideas are diabetics, post ops and one third of patients, like me have the idiopathic form, meaning they have no idea but mostly caused by a virus. There are mild forms and then there are moderate to severe. It is very hard to track and treat because of the lack of research and because there does not seem to be a "typical path." Every case is different.
When people ask me how are you feeling, my normal response is, "I take advantage of the good days and on the bad days I think about the good days and remind myself of the positive days. At the beginning I did have a lot more good days then bad days, I would have severe flare-ups, however they were spread out and the pain was still bearable and controlled by me. Along this journey, as my illness has progressed, I do have a lot more " bad" days, and a lot more flare ups. At the beginning it was so much easier because I still had a very optimistic view and my emotional strength had yet to be challenged. However, now, within the last three years or so, the flare-ups are getting closer and closer together, the pain that goes with them has gotten more intense, my daily pain level gets down to about a "5," and both my physical and emotional strength get challenged daily. EVERY DAY THERE IS A NEW OBSTACLE AND I WILL CONTINUE TO FIGHT EACH OBSTACLE AS THEY COME.
Gastroparesis is actually referred to as invisible pain, because most doctors do not know enough about the actual disease and it is hard to find a dr. that will go outside the box. Most of what I know has been from my research and from social media support groups. I honestly think that the best thing I have done is joined a few support groups and also attended a medical conference, being around or being able to talk to people who are or have gone through similar situations has helped the most. There are tests that can be done to diagnose GP, and there are medications that they try and some people react to medications and some don't. But the pain is so hard to describe and there is no way to prove that you are in pain. And that is why it is referred to "invisible pain." There was a time I came home from an appointment with my GI dr. and I felt so beat down from being told over and over from him that the pain I had in my abdomen was not caused by my GP, it was a secondary situation. He basically told me that if I went on pain meds, in the end I was going to die from addiction. When I got home I started researching and I remember one of the first things that came up in the Google search for gastroparesis was "invisible pain." I read and read and printed out research for my next appointment. However I didn't stop there because I found a page that had accounts of other peoples experiences and as I read each one they sounded like they could have came from me. So many people, similar pain, similar dr. responses and still 3 years later, still looking for that specialist team that will find the "zebra" that can help me and so many others live a more painless life.
No matter how defeated I might feel, I remind myself: that I am not alone and that I know my body more then anyone else and I know when something is wrong. I remind myself just how lucky I really am, I have had a lot of close calls but there is one thing you never know how strong you are till it is tested!!
"silent sickness">> defined as an "internal battle", because for the most part we appear to be normal on the outside but inside we are hurting. Usually hurting in more then one way, physically in pain, and also emotionally in pain. Screaming for help mostly silently because trying to get someone to understand what is going on inside you, can be so emotionally draining, makes you to weak to even continue looking for help. There are a lot of these types of illnesses and because of different factors even people dealing with the same illness may report the pain differently. I'm sure everyone has probably one time or another been asked by the medical profession, rate your pain, a number from 1 to 10, 10 being the worst pain you have ever experienced. Everyone has a different pain tolerance, and everybody's bodies react different. Also, trying to describe your pain to someone, while you are in pain is hard enough and describing it with "a number" is even more difficult.
Before proceeding just a reminder of what gastroparesis is<< is a GI dysmotility condition which doesn't allow for proper motor and nerve function within the digestive tract. So in normal terms, the muscles in my stomach no longer contract resulting in food either sitting in the stomach or not even making it that far. It is very under studied and very misdiagnosed. Reminder from earlier posts they don't know exactly what causes it, however the three main ideas are diabetics, post ops and one third of patients, like me have the idiopathic form, meaning they have no idea but mostly caused by a virus. There are mild forms and then there are moderate to severe. It is very hard to track and treat because of the lack of research and because there does not seem to be a "typical path." Every case is different.
When people ask me how are you feeling, my normal response is, "I take advantage of the good days and on the bad days I think about the good days and remind myself of the positive days. At the beginning I did have a lot more good days then bad days, I would have severe flare-ups, however they were spread out and the pain was still bearable and controlled by me. Along this journey, as my illness has progressed, I do have a lot more " bad" days, and a lot more flare ups. At the beginning it was so much easier because I still had a very optimistic view and my emotional strength had yet to be challenged. However, now, within the last three years or so, the flare-ups are getting closer and closer together, the pain that goes with them has gotten more intense, my daily pain level gets down to about a "5," and both my physical and emotional strength get challenged daily. EVERY DAY THERE IS A NEW OBSTACLE AND I WILL CONTINUE TO FIGHT EACH OBSTACLE AS THEY COME.
Gastroparesis is actually referred to as invisible pain, because most doctors do not know enough about the actual disease and it is hard to find a dr. that will go outside the box. Most of what I know has been from my research and from social media support groups. I honestly think that the best thing I have done is joined a few support groups and also attended a medical conference, being around or being able to talk to people who are or have gone through similar situations has helped the most. There are tests that can be done to diagnose GP, and there are medications that they try and some people react to medications and some don't. But the pain is so hard to describe and there is no way to prove that you are in pain. And that is why it is referred to "invisible pain." There was a time I came home from an appointment with my GI dr. and I felt so beat down from being told over and over from him that the pain I had in my abdomen was not caused by my GP, it was a secondary situation. He basically told me that if I went on pain meds, in the end I was going to die from addiction. When I got home I started researching and I remember one of the first things that came up in the Google search for gastroparesis was "invisible pain." I read and read and printed out research for my next appointment. However I didn't stop there because I found a page that had accounts of other peoples experiences and as I read each one they sounded like they could have came from me. So many people, similar pain, similar dr. responses and still 3 years later, still looking for that specialist team that will find the "zebra" that can help me and so many others live a more painless life.
No matter how defeated I might feel, I remind myself: that I am not alone and that I know my body more then anyone else and I know when something is wrong. I remind myself just how lucky I really am, I have had a lot of close calls but there is one thing you never know how strong you are till it is tested!!
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