Constantly Doubting Your Symptoms When You Remain Undiagnosed
It’s crazy how easily you can start to doubt yourself. I have a diagnosis for one main issue, but as seems to be the case with many people, once one thing goes wrong with the body, a cascade of new issues emerge.
Doctors acknowledge my as yet undiagnosed symptoms because they are pretty hard to debate. Pneumonia. Anaphylaxis. Idiopathic angioedema (very, very obvious enormous swelling of body parts). Chronic infections. Visible skin issues. Dental disasters. It’s an enormous list that never seems to end.
But, when I start to improve a bit, since the doctors don’t know the cause, they start to treat it like it doesn’t exist or isn’t worth investigating. Then, when my body gets out of control again, it takes a while to be taken seriously and I feel guilty for trying to get help.
I have moments when I doubt if my symptoms are real. The mind can’t escape the effects of chronic illness and unexplained illnesses. I can have an enormous foot and feel like maybe it’s just not as bad as I think it is. I need to ask others if it’s really that big. I need the reassurance.
I worry that maybe the doctors will brush me off. Maybe it’s not severe enough yet, not worth going to the doctor. I can have pneumonia and be on prednisone and multiple courses of antibiotics because it’s stubborn, yet I feel unjustified in asking to see a specialist again. I feel ashamed. Like it’s somehow not real, even though it’s obviously very real.
Then there’s this aspect: when the doctors get so used to you having these severe issues, they don’t panic because “it’s normal for you.”
What does that even mean? Chronic pneumonia is now normal and OK when it comes to me? Why?! Losing 10 teeth in nine months is now just “how my body is” and “no big deal?!” They get so used to these things happening to me that it’s become the norm and isn’t being looked into as much as I feel it should be. Reacting to anything and everything whenever my body wants has become acceptable?
These attitudes from doctors affect how my mind deals with this. I feel like if I complain or want more tests, I’m unreasonable. Overly worried. It’s not a big deal. This is normal for me. There’s no cause so it can’t be that serious. I’m wasting their time. I’m a nuisance.
Except all of these things are a big deal. All of these issues are serious. They impact my life severely. But I have this battle in my brain sometimes where I feel like I’m overreacting. I don’t trust my own symptoms. I doubt them. I delay going to doctors because it has become my normal, and in a weird way, I’m used to feeling this awful, and I’m so tired of the fight.
I’m in this strange no-man’s land, where I’m believed but not being helped much by the specialists. They’ve given up.
I’m so grateful to my main GP, because, although he also is now very used to this and calls it my norm, he is still trying to help me make it so that it is not my norm anymore. Without him I may have given up a long time ago.
There’s just no way that our mental health can remain unscathed by chronic illness and the never-ending battle for answers. When tests are negative, I feel shame, as though I didn’t need the tests and it’s all in my head. I start to feel like I can’t believe myself any longer.
It doesn’t last, the doubt and shame. It’s more like the tide. It ebbs and flows. When things get worse, to the point where they are undeniably severe, I become reasonable again, knowing it’s not “all in my head.”
When I’m in the moments where I fear I’m somehow causing this myself, my main doctor constantly assures me it is far too severe and involving too many body systems at once to even suggest it could be psychosomatic. I often need him to reassure me of this, and I’m very glad he takes the time to do so.
If you have unanswered health issues and experience these feelings of self-doubt, know you aren’t the only one who feels that way at times. Find people you can trust who will reassure you it is very real and you deserve help from your doctors.
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Thinkstock photo via ChesiireCat.
Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies. Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life. Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer. She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver. She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.
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