We’ve all been through the “undiagnosis phase” of chronic illness. This can cause a lot of stress and frustration. New Pact Blog writer Nicole shares her story with being un-diagnosed.
Before you get “sick”, you hear about others having health concerns such as diabetes, lupus, arthritis (just to name a few well known ones). But, you never really hear about the long, exhausting road some take to get to their diagnosis. This in itself is half the battle!
For me, it all began after the birth of my first daughter- rapid heart palpitations, extreme weight loss, hand tremors, and much more. BOOM! I had developed an extreme case of hyperthyroidism (Grave’s Disease), which is an autoimmune disease where your thyroid makes your body attack itself. Before this, I honestly didn’t even know what a thyroid was or did- Did anyone ever teach me about this in school? Although that diagnosis was found in a timely manner, everything else afterwards did not. And no one really prepared me for the aftermath.
Years post total thyroidectomy, my thyroid and hormone levels were never normal, and I began to develop major muscle and stomach issues. I would bring it up to my endocrinologist just to be told “no those don’t relate to your thyroid issues, here’s a different dose of your meds”. END. No other questions, no other concerns, just a flat no, try some new pills. So am I crazy? I could barely eat anymore without throwing up, the most I could take was plain chicken and brown rice. I could no longer enjoy nights out for dinner and drinks- And how else does one socialize!? I had constant stomach pain and flu like symptoms, constantly in the bathroom. But my test results- Normal! “You’re fine!” the numerous doctors would always say. Again, is this all in my head? Am I going crazy? Because these symptoms are ruining my everyday life.
More time passes, and still no diagnosis. What now? Become your own doctor, I guess. I did my research, I joined groups, I tried to pay attention to my body more, changed my diet. All without the help of any professional who claimed I needed psychiatric help. At this point, I was starting to look like a compulsive complainer who was too lazy to do things or live an everyday life like a “normal” person. The last thing I wanted was to come off as a weak complainer, but there’s only so much pain I can mask. Now, the fatigue was really setting in, my muscles were in a constant soar and painful state, and my mood was just unbearable most of the time. But if my doctor can’t find anything and says I’m ok, who wouldn’t believe them over me? My medical bills are pilling up from constant tests and specialist visits, and frankly, these visits and arm pricks are exhausting in themselves. I gave up- I didn’t see another doctor for about a year. Did it help me? No- but that’s about the same level of help I got from the professionals, just cheaper. I feel like I can’t keep trying to make myself feel better anymore, so I just lived with it. And what kind of life is that? Living every day just going through the motions, hoping a flare up doesn’t come along and knock you on your tush, struggling. Because, I have things to do! But my body doesn’t care.
About six years later, I was finally given the diagnosis of Fibromyalgia. Already beaten down and dragged around, was I happy to finally put a name to my struggle? Honestly, not really. I think people were already tired of me and set me aside. And there’s really nothing you can do about Fibro, anyways. I’ve come to see that if others cannot physically see your pain or your diagnosis, they begin to not believe you or try to understand. It’s the hardest thing to have one or multiple invisible illnesses because you often have to deal with them the same way- invisibly. And not only do I have constant physical obstacles in my everyday mom and work and GENERAL life, but now I have to deal with them (what seems like most of the time) alone. This is when my emotional and mental obstacles have begun.
The un-diagnosis journey as been a long and tough one, and its made me look like a complete liar and complainer. But I know my truth, and I do my absolute best to carry on with it on a daily basis. I get up when my body does everything in its power to stay down. I give my family my best, even when all my spoons are completely gone. Through the “good” days and the flare up days, I push on. One thing that has truly helped me from staying sane has been finding others in my groups who have similar medical struggles. Sometimes being able to “complain” to someone who actually understand you is refreshing! Just try to never give up on yourself, even when it seems everyone else has. You’re too important to not have answers.
Nicole is an ambitious, young wife and mother residing in the Chicago suburbs. Although she suffers from a few chronic autoimmune diseases, this does not prevent her from being a multi business owner, photographer, amateur writer, and soccer mom.