Rachel Pastiloff
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1
I always remember having pain as a small child in places like my low back but it was never anything serious enough that it required me to go to a doctor. I saw chiropractors as a teenager and then probably around 18 or 19 years old I started having pain in my shoulders. By my mid 20s it was pain in my upper back which was very connected to my menstrual cycle. I would really be in pain in my whole body whenever I was about to get my period. After my first child was born, I started having more and more pain on a very very regular basis and there was not a lot of explanation for what I was going through.
I started to have a lot of things go wrong after my oldest was born and then by the time my youngest was born I was having things like my thyroid stopped working and I was in pain on very very regular basis. I was always tired and I had of hospitalization where they couldn’t quite figure out what was wrong with me aside from the fact that I had no potassium at all in my body. It was the most pain I’ve ever been in and it essentially paralyzed me. I couldn’t move my legs and I was having hip spasms that were worse than labor pain.
2
In 2012 after we moved, my husband made me do all this like heavy lifting, a couple days after the move I was unable to move, unable to use my hands or my feet. I was so tired, I felt like I was dying. My mom ended up staying with me for like three months. They tested me for everything you could think of and during that time. I had multiple doctors tell me that I was just a hypochondriac
I would go through periods of being an incredible health I was a yoga teacher at a health coach and running and going to the gym six days a week and then in April 2015 I woke up in very serious pain in my muscles in my abdomen and my low back and I’ve never had a day without pain since then.
It was a trip to a massage therapist when things became clearer. She told me that I was hyper mobile and she really wanted me to look into that. During that same period of time I got my first full spinal MRI and when they really started to put two and two together. In 2015 I had the first doctor tell me that I was hyper mobile and might have hyper mobility syndrome and then finally in 2019 I was officially diagnosed with Ehlers-Danlos hyper mobility syndrome which is an incurable connective tissue disorder. It’s left me in constant pain every day. I have a whole host of other medical complications as well - I have an in curable bladder condition that goes along with it significant G.I. I have very significant spinal issues, cervical all the way to lumbar. I have arthritis in both knees and one ankle and most likely in my shoulders. I’ve got torn rotator cuff‘s in both shoulders and that led to a frozen shoulder on the left side which is quite painful. I have obviously a lot of nerve damage in my spine and TMJ and just in general I'm not able to heal.
3
I have had many experiences with silencing. It is not uncommon for many individuals who have EDS to be written off as just pill seekers or hypochondriacs. This is for a variety of reasons, but mostly because it affects the entire body so it is very hard to be taken seriously by anyone.
I walked into the office of an orthopedic surgeon in State College Pennsylvania where I was previously living. The doctor was very dismissive and refused to do any MRIs and asked me multiple times what was the reason for my visit and why was I there because I looked fine. He then proceeded to tell me that I should save my money and fly back to Atlanta if I need anything done because they wouldn’t be able to do it there, in the office I was presently sitting in. The doctor then looked at me and said you know I have another patient she’s almost half your age and she is in way worse condition than you. She looks like she’s in way more pain than you. I looked at him with a straight face and said I am the mother of a disabled child. I don’t have the option to “look worse or give in. “I have to get up and take care of another human no matter how I’m feeling.” What he really was saying was that I had make up on and that I was able to function and so he just wrote me off, because I didn’t look sick enough.
Prior to my diagnosis in the year 2012 I became very sick. I didn’t know what was wrong with me I just know that I had just moved and my husband made me do a lot of heavy lifting. The next thing I knew I was unable to walk where are use my hands or anything and I was so weak I was continually passing out. I was in tremendous pain. My mom stayed with me for three months to help me with my children. I went to a variety of doctors including a neurologist in town south of Atlanta. He has zero bedside manner and after running a variety of tests with me he looked at me and said you know it’s wrong with people like you? He said people like you that have everything wrong with them actually have nothing wrong with them, there’s nothing wrong with you. I just sat there and cried. I wish I could say that these instances are not common but they are very common. I do believe that because I look like a put together “woman “it makes it harder for me to get taken seriously that I have a chronic and very painful condition.