8 Things I’m Learning About Life With an Auto-Immune Disorder

by Ivy B
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You know what?  I’m sick. Not just today, sometimes, or on the rare occasion, but every day … sick.  I found out at the end of 2013 that I had an autoimmune disorder called Hashimoto’s Thyroiditis.  The reason I want to share my story with you is because I’ve begun to realize a few things about life and motherhood since being diagnosed with and being “treated” for this disease.  Life and motherhood hasn’t been remotely close to what I pictured, and it’s taking me some time to come around to accepting it (and I’m still working on it).  In the process, I’m learning a few things about life that I never really gave much thought to.

1) I don’t look sick.  No, I probably don’t look sick, except that I’ve lost a good deal of weight since going gluten free (and it’s weight I couldn’t afford to lose).  Because I don’t “look” sick, people don’t understand how terrible I feel, or why I went gluten free.  Even family has been a little un-supportive at times because they just don’t get it.  I guess they have to see to believe?  The point I’m trying to make here, is that we have no idea what anyone is going through at any given moment in their lives and we shouldn’t judge someone by their looks.

2) I struggle with energy and brain fog every day.  I’ve been told plenty of insensitive things like “it’s because you’re a mom”, basically being called lazy, or because my thyroid numbers look fine nothing is wrong.  Here we are after a year on medication, my numbers always come back “fine” and guess what?  Still struggling!  Treating a single symptom of an overall disease hasn’t exactly helped the auto-immune part.  Shocking!  What we think we know about a disease isn’t what we read about, but what the person is truly experiencing.

3) It affects every aspect of my life.  I’m not the mom, the wife, or the person I’d hoped to be in life.  Despite all the changes I’m trying to make to become a healthier individual, I seem to be going downhill and it affects everything.  I’m not as easy-going, certainly not as happy, and my lack of energy makes it difficult to be patient with just about anything or anyone.  On those good days when everything in the universe seems to align perfectly, I see myself as who I thought I would be.  It’s usually a fleeting moment or simply a day, followed by more days of feeling like I’ve been abducted by aliens and I don’t recognize myself.

4) I sympathize more with people.  I don’t know what they’re dealing with and unless someone comes out and says it, I don’t know if they’re sick with something too.  Expressing exhaustion, impatience, feeling like a failure … I get it, even if I don’t understand completely what the other person is going through.  This gives me much more insight into the fact that we all have something we’re struggling with and we all could use a little sympathy during hard times.

4) I’m still a problem solver.  Since doctors have been unhelpful in the treatment of my disease, I’m relying heavily on my ability to solve my own problems.  I don’t just go with what you tell me.  I go by my instincts and I search and research to find appropriate answers.  If you call me with a problem, I’m going to, by nature, try to help you with it.  That part might get me in some trouble if the person just wants sympathy and I’m trying to offer advice.

5) There are days I just want to throw my hands in the air and give up, but I can’t.  Well, now that I’m a wife and mother, I can’t do it.  I have to remind myself to be strong because other people are relying on me.  That’s both a blessing and a burden.   Since I can’t run away from it, I have to continue to be strong and keep on fighting.

6) I don’t have patience.  I know, I said it already, but there it is.  I don’t have patience for not having answers, not seeking answers, and not trying your hardest to do everything you can to make things better.  I don’t have patience for feeling like a failure in any part of my life and I don’t accept it.  I push on.  I give myself a little slack … some days I’m not the best mom, but I do the best I can.  Other days I’m a great mom and wonder why I struggle on the off days, only to be reminded when I’m having an off day.

7) Some days, I just want to roll over and go back to sleep… for the entire day.  I believe in fighting our illnesses, but sometimes we just need to rest.  That does not mean that we allow our illnesses to take over us and spend every day sulking.  All we can do is try our best not to let our illnesses take over us completely, but some days we should just let our bodies rest to give ourselves energy for days we really need it.

8) Be open to new experiences.  I’ve never had a great deal of luck with doctors.  I love Shelby’s pediatrician, but my experiences with most doctors has rarely been positive.  Maybe it’s because my autoimmune disorder makes me difficult to understand, but I feel like I get nowhere with doctors.  From a misdiagnosis resulting in unnecessary exploratory surgery on Shelby to taking two years to finally diagnose me with Hashimoto’s, I find that I can generally rely on myself to figure things out before a doctor and have learned not to put my trust in them completely.  This brings me to today.  I’m opening up my mind to try new things to help myself because I haven’t yet found a doctor to help me fully.  I’m currently adding supplements and starting essential oil treatments (which my husband is lovingly calling witch doctor stuff) in hopes of improving my quality of life.  I’m sorry, but when a patient feels like crap, the acceptable answer isn’t “Well, you’re labs are fine” and keep on doing the same things.

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