You Can't Have what You Can't See

When I tell people that I'm sick, more often than not I get a quick up and down glance and an almost immediate sense of skepticism, because nothing appears physically wrong with me. I can almost hear your thoughts. She can't be THAT sick, she looks fine. She can't be hurting THAT much. It can't be THAT bad. I wonder if she's a hypochondriac? Maybe she's just a whiny baby? Seriously, I've seen the looks over the years. That's why I have been so hesitant to share my Alpha Gal diagnosis, but I am doing so because I know how hard it is to get diagnosed and maybe my story will help someone else.

Think about what it would be like to have something wrong with you, but you can't figure out what it is. For 30 years I told doctors how I felt. Always exhausted. No energy. Achy joints. Mood swings. Migraines. Days I not only didn't want to get out of bed, but physically barely could. Difficulty falling asleep. I was diagnosed with depression. Anxiety. ADHD. I was told I had fibromyalgia, but it was explained to me that it was a "catch all" diagnosis for someone with "women problems" and "bad joints". That was over 20 years ago and I think that's actually what they believed at the time. But none of the diagnoses or subsequent treatments ever made me feel much better. I got to where I doubted myself.

The bad joints were indeed a thing and fast forward to my having both knees replaced before the age of 50. COVID hit 1 month later. Then things got worse.

Symptoms I had never experienced before. "Panic attacks" that lasted hours, not minutes. Attacks that were so bad I prayed for death in the midst of them. Projectile vomiting. Sweats. Chills. Throat closing up. Trouble breathing. And the "panic". Extreme panic. Which then worsened the symptoms. When I finally wore myself out so completely that I passed out, I slept for hours. Upon waking I would have a migraine. No sound, no light. Some days I slept through the next day. If I had work that couldn't wait- I'd do it from my bed. I did the best I could.

Over the next two years I went through seven doctors and specialists. Test after test on my heart, my lungs, my thyroid, ears/nose/throat, testing for all autoimmune disorders, and in the end the final determination was that I should get back to counseling and learn to deal with my panic attacks, because that's all it seemed to be. They made me feel like it was all in my head. It was breaking me. It NEVER occurred to me that i could be having an allergy attack. A very serious, life threatening, allergy attack.

I thank God every day that I found my Doc. He never once made me feel like my symptoms weren't real or imagined. He tested my body to see how it reacted to everything imaginable. We found out how sensitive I was to gluten and how I need to moderate my sugar and carbs. Making just those changes made me feel like a new person in a lot of ways. But the attacks continued. Then we diagnosed the Alpha Gal. And that diagnosis changed my life, in ways I could never have imagined, but it gave me a chance at having a life again.

But God it's hard. I wish I could tell the newly diagnosed that it gets easier but I have been living a meat and dairy free life for over a year now and its still hard EVERY FREAKING DAY. I still have mishaps ALL THE TIME because MEAT is in freaking EVERYTHING. And if it doesn't have meat it has gluten. I don't go out to eat much. I don't like to travel. I hate going to parties or work functions and finding there's nothing on the table I can even eat. I used to be such a social person; I'm not anymore. But with what I've learned would I purposely put something with red meat in my body? OMG, Absolutely not. The stuff was killing me. I was killing myself with it. I hear stories every day of someone with Alpha Gal who went into anaphylactic shock and died from it. This stuff is not to be taken lightly. I wish people would understand that.

So, as usual I took a long way to get to the bottom line, which is- don't judge a book by it's cover? Just because you can't see something doesn't mean it's not real? Walk a mile in my shoes before you judge me? Quit being a close minded and judgy douche? There are a lot of quotes, cliches and idioms, I know I'm not touting any new kind of concept here. But, coming from someone who's often very sick, and who's been on the receiving end of your misunderstanding and maybe even disbelief- it sucks. It sucks that people doubt and judge. It stinks that it often seems that people have to go through bad experiences themselves before they can experience the empathy needed to try to understand other people's circumstances. But just know, you can't look at someone and know what's going on in their lives. You don't know how they feel. You don't know what things are like at home. You don't know what their life is like. You don't know that what you say to them or how you treat them may affect them in ways you could never imagine.

Please be kind to one another. Be empathetic. Give people the benefit of the doubt sometimes. Show some grace. I promise you, you never know what a moment of kindness and understanding may mean to another person.