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.