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26 Honest Statuses People Who Are Undiagnosed Want to Post, But Don't

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Being undiagnosed or having an undiagnosed family member is probably one of the most complex, frustrating medical states to be in. There’s no name to help others relate, and no statistics to draw from. New symptoms can be just as worrisome as the old. The time, money, and emotional and physical strain put on people and families to search for a diagnosis is tremendous.

Those who are without a diagnosis deserve to have a voice and a community. They deserve to have quality care and medical attention while working towards a diagnosis. We know the journey can be long and trying, so we asked our Mighty communities: What’s one honest status you wish you could post, but don’t?

Here’s what the community had to say:

  1. “Just because you don’t have a diagnosis yet doesn’t mean you aren’t validly sick.” – Vanessa B.
  2. “I currently am struggling with undiagnosed pelvic pain. When people say, ‘Oh, everyone has bad periods,’ I just want to scream, because that’s what it feels like for me every day, all the time. Just because you don’t understand what I am going through doesn’t mean you get to belittle my experiences and make them seem less than they are.”– Leah W.
  3. “How do you fight a ghost? A faceless disease destroying your life? What about doctors without answers, lacking the desire to help you? How do you fight an illness so invisible to others, they forget you’re sick — or an isolation so severe it’s difficult to fight the unknown, even for another day?” – Masha P.
  4. “There can be a huge emotional and mental toll to being undiagnosed. It is not just not having a name for your symptoms. As a parent, sometimes it is having to decide how much you are willing to put your child through just to attempt getting a diagnosis.” – Connie W.
  5. “It feels like you fight and battle endlessly just to live, just to have a somewhat normal life.”– Juliana F.
  6. “On my bad days, I began doubting my own senses. I thought, ‘Maybe it is all in my head.’ I began to believe the doctors and doubt myself, so I stopped seeking help. I withdrew from family and friends and tried not to let my struggles show, because I was embarrassed that I didn’t have any answers to the questions I would get. It’s a very lonely feeling when you can’t even trust yourself anymore.” – Marie H.
  7. “I’ve also spent my entire life not living because I was sure I was going to die at any time.” – Jen D.
  8. When you’re undiagnosed, it’s not like an episode of ‘House.’ You don’t get a team of doctors who work together and try to figure out what’s wrong with you. You get years and years of going from one doctor to the next, constantly having to retell your medical history and provide records at every turn. There’s no magic. There’s no group effort to cure you. It’s all on you to find a doctor who cares enough to look and knows enough to figure it out. It’s a desperate situation where you spend years wondering if you’ll die of whatever you have and end up facing the ever-changing side effects of ever-changing medication regimens.” – Amanda P.
  9. “Since I have no official diagnosis, I am judged and often called a ‘faker’ or hypochondriac.” – Kelly K.
  10. “You live in a state of limbo. Every doctor’s appointment is a fight to get them to believe you, to get them to listen to you, to get them to take you seriously. It’s discouraging and exhausting. After a while, you just don’t have the energy to fight for the diagnosis anymore.” – Mel H.
  11. “We are a culture obsessed with labels. Being undiagnosed means you are label-less in the medical community and in society. Forever, you are questioned and criticized for not being able to give an explanation for the medical problem you are facing. In addition, people assume that if there isn’t a “medical explanation” that means you must be causing the issue (such as stress, diet, smoking, etc.). Being undiagnosed automatically diminishes your struggles. Sometimes science can’t explain your symptoms. However, that doesn’t mean they aren’t real.” – Katy S.
  12. “I can’t afford to see a doctor or get the blood tests. I went from walking six miles every day to needing a cane if l ever leave the house in only 18 months. A doctor at a charity clinic said l was fine and had nothing wrong with me.” – Alexis T.
  13. “It’s inhumane — the amount of pain one human is allowed to deal with, simply because doctors can’t communicate. Or won’t. It’s demoralizing, to say the absolute least.” – Becky B.
  14. “I swear I’m not ‘crazy.’ I’m just in pain.” – Jill L.
  15. I feel like I don’t have a voice being undiagnosed. It doesn’t seem to matter how much pain and suffering I am go through, it seems to never be enough for anyone to believe me.” – Anna C.
  16. “I’ve lost my identity and my ability to work full-time.”– Vicky W.
  17. I yearn for a diagnosis — something real and tangible. I have tried everything and my symptoms persist and impede my life significantly. But I want something real to fight, not just the strange blurry pain. I want the legitimization that comes with a diagnosis.” – Jacqueline B.
  18. “I’ve been fighting for four years to figure out what’s wrong with me. I quit high school to do online school so I could see more doctors. I’m still fighting for answers even after every test and every time I get called a drug seeker. I’ve put my life on hold at 19 to figure out what’s wrong with my body. I will continue to fight and not give up, even if I have to see every doctor in America. I’m not lazy. I’m not faking anything. I’m just trying to survive.” – Raya D.
  19. “Almost every day means being in pain and the occasional odd medical problem with no explanation. My insecurities go haywire with all the possible reasons for why this has happened to me. I wonder if every new symptom is related.” – Ellen B.
  20. A piece of me shatters every time a test comes back ‘normal.’ I know I should be thankful for the health I do have. Every new specialist I see is so confident they will find the root cause, but after a few appointments they are all disappointed and send me to someone else.” – Jordan B.
  21. “Being undiagnosed sometimes makes me question myself. Is this all in my head?” – Jessica D.
  22. “I’m so tired, tired of trying to explain, tired of trying to be lovely, happy, and engaging. Tired of letting people see, the real me. Tired of seeing the confusion and disappointment in their eyes and face.” – Sherry M.
  23. “It’s frustrating to be told, ‘There’s nothing wrong with you,’ when there clearly is. You know your body best, but there is a group of people telling you otherwise. I’m 19 years old and I’ve been waiting six years for a diagnosis. I’ve only had maybe four tests done (not including blood tests) because normally, I’m brushed off and it’s blamed on stress. This needs to end.” – Lacie M.
  24. “Not having a diagnosis is like being a Jane or John Doe. You know you’re somebody, but who? You don’t belong anywhere, so where do you turn to get support? The constant worry of an uncertain future is sometimes too much to bear.” -Ronda Y.
  25. “I’m so tired of being a ‘medical mystery.’ It’s not nearly as ‘cool’ as it appears on television.” – Jessica R.
  26. “Going undiagnosed for the majority of my life caused me to be insecure, paranoid, feel doubted, and extremely frustrated. I knew something was wrong. When I discussed others’ health and lifestyle issues or progress, I realized I was totally different. This pushed me to become my own advocate.” – Alisha J.

Are you undiagnosed? What’s one honest status you wish you could post but don’t? Let us know in the comments below.

Originally published: August 16, 2018
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