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22 Secrets of People Who Are Waiting for a Diagnosis

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Living with a health condition can be hard, but so is living with a health condition that has no name or has yet to be identified. Waiting for a diagnosis can present its own unique challenges.

The Mighty asked our readers who are still waiting for a diagnosis, or who have loved ones who are, what they wish the world could understand about them.

This is what they had to say:

1. “It feels like you live in limbo and are lost in a system you know don’t know anything about. It’s chaos and it’s stressful. It’s scary.” — Amanda Dillon

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2. “I’m not an inspiration, I’m not brave, I’m not strong and I don’t deserve pity.” — Bunny West

3. “I will keep researching my symptoms and looking for a diagnosis because if I don’t advocate for myself, no one will. Because no, it’s not going to just go away.” — Elizabeth Rajchart

4. “How I look and behave is not representative of how I feel. It takes Herculean efforts to do what others take for granted. I have always said that success is so much harder when you’re simultaneously fixated on survival. I’m not weak. On the contrary, I’m a survivor.” — Andrea Sorkin

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5. “We’d give anything to have a proper diagnosis so we can get our child the help they need and deserve.” — Hilari Cappiello Sautbine

6. “I just wish others knew how hellacious this process is. If they knew, maybe they’d be a little more gentle, a little slower to spit out advice and a little more likely to grab my hand and walk through this process with me. Being chronically ill with no definite diagnosis has opened the door for a lot of people to walk out of my life. I wish they knew how much I needed them to close the door and stay.” — Christine Suhan

7. “We don’t know what the future holds. We’re searching for answers, but [we’re] not sure we’re going to like the answers that may be coming. So we put a smile on and keep going.” — Diana Cosman

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8. “Stop calling me an attention seeker! Why not ask me how I’m doing instead of thinking I’m faking my illnesses?” — Katy Purr

9. “As a parent, [you] struggle with doing just one more medical test. You hope against hope that this is ‘the test’ with the right answer, but your heart aches thinking about putting your child through another procedure after a year of MRIs, EMGs, nerve conduction studies, genetic testing and countless blood draws.” — Jami Leavell 

10. “Lack of a diagnosis does not mean lack of symptoms or issues.” — Olga Evans

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11. “There aren’t always explanations for things that happen. You don’t have a ‘go to’ handbook for life.” — Tempi Montgomery

12. “Medicine doesn’t always have the answers and technology to diagnose everyone.” — Michelle Roger

13. “Just because I don’t have a diagnosis doesn’t mean I’m making it up.” — Jessica James

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14. “A negative test result can be really upsetting, even if you’re being tested for something bad.” — Kimberly Matthews

15. “We aren’t looking to label our child. We secretly hope they will grow out of it or that it’s our parenting. But we do need answers to know how best to support our child and improve everyone’s quality of life. And we would really appreciate support, not criticism, at least while we tread the assessment path. It isn’t fun; I don’t want this, nor does my child. We would choose ‘normal’ if we could, but we can’t. Above all, I still love my child and the life we are living.” — Ingrid Senger-Perkins

16. “It feels like you’re walking down a trail in total darkness and have no idea where that trail leads.” — Becky Brainard

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17. “I, my husband and [our] medical team have looked into every possible cause for my child’s disability. I know your intentions are noble, but even suggesting that something I did (or didn’t do) during pregnancy (e.g. taking migraine meds or not resting enough) being the potential cause for my child’s still-unknown medical condition is just pointless and cruel.” — Shanna May Bengtson

18. “We never know what tomorrow will bring. Our life no longer has a predictable road map and we’ve learned to go with the flow, not because we are so chill and laid back, but because our day can change in an instant. We have learned to embrace the chaos… most days.” — Joanna Osgood Reidy

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19. “Deciding how to help your prepare for the future when you don’t have a clue if there will be one or what it will look like is gut-wrenching.” — Lindy Burnett

20. “It’s emotionally draining. I can’t decide if I want a diagnosis for my daughter or if I want her to stay a medical mystery.” — Kim Schmidt Miscavage

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21. “As time goes by I’m starting to come to a peace with the fact my child is unique and that there are limits to science.” — Jessica Thompson-Leads

22. “It’s exhausting. And I can’t process or grieve or move forward because I don’t know what I am processing or grieving or moving forward from.” — Angela Haynes

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*Some answers have been shortened for brevity.  

Originally published: August 28, 2015
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