The Awkward Stage: When Your Symptoms Are Unexplained and Undiagnosed

January 22, 2016

So, we've already talked about being a spoonie. But what if you don't have a diagnosis?

I've been there. And it's awful.

For years, I suffered from random headaches. We had no idea where they came from. We thought it was my hair weighing my head down, so I cut it all off. We thought it was corn syrup, so I quit eating that. We tried solution after solution, but nothing seemed to help. Even after cutting my hair and avoiding food additives, I still got headaches.

In addition, there were all sorts of random symptoms. Dizziness and nausea. Exhaustion. Overstimulation. I couldn't seem to exert myself at all. Even as a little kid, when we went to an event, I'd come home, cry, and conk out.

If you know the symptoms of fibromyalgia, it probably seems obvious to you what I had. And in 2010, we finally figured that out, too. But before that, there was a long waiting period. And quite honestly, it sucked.

Not knowing what's wrong with you is one of the hardest things to go through. There was a lot of fear--what if I was dying? Why was I so different from all of my peers? Why did my head pound like it was a ticking time bomb? In a way, that's exactly what my body felt like: a ticking time bomb. What if I never got diagnosed? What if we ran out of time? I felt like something was seriously wrong with me, and not knowing what it was ate away with me.

Finding a diagnosis isn't easy when even doctors can't figure out what's wrong with you. I had MRIs. I saw so many doctors. Some of them were helpful. Some of them were not, and some of them were just plain rude. Everything about my body was a mystery--to both myself and the people who I assumed would be able to tell me what was wrong.

It was stressful. It was frustrating. At times, it was downright heartbreaking.

In conclusion, not having a diagnosis just downright sucks. I don't have any easy answers for how to handle this. It's so hard. All I can say is, I'm sorry you're going through this. If you need to talk, let me know. Please feel free to leave a comment or email me. I'd love to listen.

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  1. YESSSS!!! How do you keep putting everything I'm feeling or going through into words??

    This has been my life for the past...4 years or so now? And I STILL have no real diagnosis. I kind of think I never will. And it's so HARD. Not just because it's scary that I don't know WHY I feel bad all the time, but because no one really understands me either. If I could just SAY I have a particular illness, I think people would accept it. But when I just say I feel blah all the time but have no explanation, people begin to suspect I'm just lazy. I've even been accused many a time of being depressed and THAT'S what's wrong. I'm an extremely happy-go-lucky, laid back person. If the world was ending I'd still probably not be depressed XD. Depression has nothing to do with these headaches and feeling blah and severe periods! It drives me up the wall when I'm accused of that. And it hurts. Just because I don't LOOK sick or have any specific diagnosis or no one else experiences what I do doesn't mean it's just my imagination. I guess if you've never gone through it yourself you don't understand it.'s frustrating.

    But goodness, I didn't mean to go on a rant. It's just so encouraging having someone else understand! Thank you for everything, Sky. You are amazing! <3

    1. I am so, so sorry you don't have a diagnosis or answers yet. It's so incredibly hard.

      I totally feel you. It's hard to deal with what other people think. Whether they've outright said it or not, I've felt like people might think I'm lazy or depressed as well, which is really hard to handle. I'm really sorry you're going through that. It's so painful (pardon the pun) when people don't think it's real and don't validate your experiences. Sometimes the emotional pain hurts just as much, if not more, as the physical. It's just HARD and TERRIBLE, and I don't like it at all. Again, I'm sorry it's happening to you. I hope you can get some answers soon and that you'll find people who truly understand. (And I'm always here if you ever need to talk. ♥)

      Ranting is absolutely okay! I'm honestly so glad I could help. You are amazing too! Thank you again for stopping by. ♥

  2. This is my life. I remember vividly going through almost every specialist in the pediatric part of my hospital when I was 17. When the (correct) diagnoses started coming back, I think I was more ready to take them because I'd spent so long searching for any answers.

    1. That makes total sense. I felt the same way when I finally got my diagnosis. I felt sad but mostly relieved, and I was just grateful to have any kind of answer. It's been a mixed bag of good and bad since then. While I'm glad to have a diagnosis, that doesn't always make it 100% easier to handle the illness. Still, not having a diagnosis is so difficult. I'm so sorry you had to go through it as well. ♥