When Reality Sinks In That You Have an Autoimmune Disease

Feel like you’re living on an island all alone?

Ever have a day that leaves you wanting to cry out of frustration from having an autoimmune disease?  I was having one of those days yesterday.  The reality of having a lifelong disease that could and does greatly affect my life is sinking in.  I’ve been on vacation for the last 8 days in Florida.  I’ve struggled to find food to eat that was gluten free and actually palatable.  Forget finding food that is free of other things like soy, grains, and dairy.  

I wish eating this way was simply a choice of mine and not a necessity.  It’s actually heart breaking and most people have no idea how difficult it can be.  Its not about the food itself that leaves me feeling like this. It’s the realization that I have this very real, life altering disease.  I’m newly diagnosed so it’s all still hitting me.  I haven’t been to see my doctor yet and I have a lot of unanswered questions about my health.  I’m scared, frustrated, sad, and fearful for my future health.  While I know that no matter what I’ll give it my all and live life to my fullest, I want a life full of energy, fun and all the opportunities that those things can provide.  So I eat the food that will allow me to live that way.  Gluten is very inflammatory and inflammation can cause many problems within the human body, pain just being one of them.  I have a tendency  to get debilitating migraines after eating gluten.  Along with joint pain in my arms and wrists. Though I can’t say for sure because I haven’t seen recent bloodwork, it’s a safe assumption that gluten causes the Hashimoto’s to flair too.  I’ve been losing hair like crazy and am very fatigued.  I’ve had a hard time keeping up with my family this trip, when it’s usually the reverse. I don’t want to be the cause of having to go back to the hotel room early when everyone else is still having fun and wants to stay up. 

It’s only been 3 months since my diagnosis but I’ve been home and life has been fairly normal there.  Leaving that environment has made the diagnosis more evident and real to me.  It’s hitting me hard with what I have.  It’s difficult to not be scared for my future health. Fearful that down the road my body will decide to not just attack my thyroid but also my spinal cord or brain.  I say this because the statistics show if you have one autoimmune disease you’re three times more likely to end up with another AI disease.  

Sometimes I just want people to listen with a caring ear and not be brushed off that I’m being ridiculous. I suppose if anyone had to walk a mile in the shoes of someone facing these same problems they’d be a little more sympathetic?  Unless you’ve dealt with watching everyone around you eat whatever they’d like and walk away from a meal without having hunger pangs, then please don’t sit there and be heartless.  My blood sugar crashes and I get sick, shaky and a headache from not being able to eat.  So it’s more than just not being able to eat good food, it’s a matter of not feeling sick.  

Back to the point of this post….as my 6 year old likes to tell her older sister “sometimes life isn’t fair!”  Sometimes we’re thrown curve balls and have to learn a new way.  I’m learning to navigate this new way of life. I’m finding ways to deal with the emotions and frustrations that come with a diagnosis.  I’ve found support in people I didn’t expect to and continued support from others.  Having someone who genuinely cares and makes an effort to be there means more than anything and can make a huge difference. 

If you’re reading this and know someone close to you that is living with an autoimmune disease, be there for them. Ask them how they’re doing. Not just physically but emotionally because sometimes that’s more challenging than the physical symptoms are.  If you’re the person dealing with an AI disease and can relate to this post, you’re not alone.  Reach out to those around you and allow yourself to be vulnerable by voicing how you feel. You never know who might be the person that cheers you up and helps you find your way.  

4 thoughts on “When Reality Sinks In That You Have an Autoimmune Disease

  1. Just wanted to take a minute to comment on how happy I am to have found your blog. I have Hashimoto’s, adrenal fatigue, hormonal imbalances, MTHR, high mercury and styrene levels, leaky gut, and everything that comes with those conditions. I struggle everyday to have the energy I need to keep up with my family, my kids are 8 and 9, and their needs and activities. I used to be the one to never need to sit down until I went to bed and I had excess energy, waking up without an alarm. Now I can’t wait until it’s time to go to bed, and often wake up feeling more tired than when I went to bed. At this point I am not fully Paleo, I had still been eating gluten-free grains as part of my breakfast, but haven’t in the last few weeks. It is sad to think that how I was eating before was certainly very “healthy”, but it isn’t healthy for me. I am actually struggling to gain weight or at least maintain it right now. I am still doing yoga and working out 20-30 minutes a day, most days it seems to give me more energy, even though it is probably taxing to my adrenals. Once again, I just wish things didn’t have to be so complicated and I often have a hard time determining what exactly makes me feel better/worse. At least a found a doctor who was able to help me find some answers, almost 2 years ago the best solution my other doctor had was antidepressants. This was after a shoulder injury put me in the emergency room with them not even examining my arm, sending me home with steroids, anti-inflammatories, muscle relaxers, pain-killers, that made me so sick, dizzy, nauseous, panic attacks, blurry vision, etc. Went through an MRI, brain/eye testing, another ER trip, numerous, doctor’s visits, phone calls, me requesting testing for Sjoegren’s, the doctor prescribing antidepressants for when I was ready to take them. I gave in an took them, Lexapro and Xanax, felt worse, took myself off of them cold turkey after 2 weeks. Finally I found a holistic doctor who took one look at me, gave me some suggestions and said that she wanted to run a full panel bloodwork. I won’t go into all of the details now, my daughter is waiting to go do something fun (hope I have the energy), but it’s nice to find someone who is willing to share their experiences and feelings.

    I look forward to reading your blog and hopefully “visiting” with you,


  2. Great, me too. I look forward to talking to you soon. I always have a lot to talk about because I have so many diseases. I find a lot of great information here at WP. I’ve spent all day today reading other’s blogs, under the category of “auto immune disease.” I am so happy I did because I gained a wealth of information that I am going to talk with my doctor’s about. Take care.xx


  3. I’m sorry you’ve been given this nasty diagnosis. I’m a member of the Auto Immune Disease Club. It is very frustrating and sad. I have over 20 diagnoses and I, like you, worry about my future health. I can see the reality and it’s very, very scary and I really have a difficult time dealing with it. I get most of my support right here at WP. I’ll be happy to walk the journey along side you. Although bittersweet, it’s much easier to walk the journey with those that truly understand how it feels to be in “these shoes” than to walk it alone. I’m here. I get it. I feel the same way. I care. I’m here if you want or need someone to talk to, vent to, whatever it is you need to do. I hope you are having a “better” day. xxxx Peace and God Bless.


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