Coming Out As Chronically Ill

When you have an invisible chronic illness nobody can tell. You look perfectly normal when people see you out or when you post pictures on facebook. You look the same way you did before you got diagnosed. People see you doing some of the same things you enjoyed doing before. You even have a job and normal responsibilities. But the truth so much in your life has changed. Everything makes you tired, everything causes you to ache, and you've either gained or lost weight from medicines you need to keep you functioning at a semi-normal level.

I made the decision to be very open about my illnesses. I made this choice because I had never heard of a few of my illnesses until a doctor was standing in front of me telling me that I had them. If you follow me on social media you will already know that I have an autoimmune disease called Sjogren's Syndrome. But what you may not know is that illnesses tend to cluster in one person. Which means if you are diagnosed with one chronic illness the chances you will have others increases.  So I will go ahead and list all of mine for you:

  • Sjogren's Syndrome
  • Rheumatoid Arthritis  
  • Endometriosis
  • Chiari Malformation
  • Gastroparesis
  • Spinal Stenosis 
  • Juvenile Degenerative Disc Disease  
  • Thyroid Goiter and Tumor
Currently I’m pretty much bed bound. My Juvenile Degenerative Disc Disease has progressed to the point that sitting, walking, and standing are too painful to them for any extended period of time. I’ve already have one surgery to help with back and leg pain when I was 21. Now they have encouraged pain management programs to help deal with the pain because the next surgical option is a spinal fusion. I’m currently waiting on a spinal cord stimulator so I can hopefully regain some normalcy in my life.  

Being a person with chronic illnesses has taught me many things. Some people will feel sorry for you or some won't believe you because you can't see pain. But a lot of times invisible illnesses are invisible because we choose to keep them that way. I've decided to be open and honest about my health because at the beginning I felt alone and sometimes I still do but knowledge and community is the answer to finding a solution for chronic illnesses. 

So going forward on my blog I'm going to be open about each of these illnesses and how they impact my daily life. I would also like to introduce you to some of the terminology we use in the chronic illness community. I've also decided to vlog my life and hopefully the first one of those will be up soon. I will share on my facebook, instagram, and twitter. You can follow me there if you are interested in that. 











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