What I Wish My Friends and Family Knew About My Daily Life With Hashimoto's

Dear friends and family,

“I have Hashimoto’s.” I’ve used this phrase many times over the last five years. Sometimes it’s a bold statement. A testament to what I overcome every day. Sometimes it’s an angry shout, said with every part of me that rails against this being my defining factor. Sometimes it’s a whispered admission, not something I want to share, but it’s beaten me for now and I need you to know this is not my fault.

“I have Hashimoto’s.” Stated as simple fact, I live with it, and life goes on.

I’ve cursed, and screamed, and cried, and mourned. I’ve thought I was improving, only to backslide. I’ve thought I’d moved to acceptance, only to return to denial and furiously fighting against my disease. “My body is broken,” I’ve lamented, only to receive blank stares and questions of “What do you mean?” “My best day will only ever be 80 percent of what I once had,” I’ve stated, only to be told, “I couldn’t live like that.” “I’ll never get better,” I’ve said. “This will be up and down, and I just have to live with it.”

Every decision I make has to take my health into consideration; a miscalculation throws everything off for weeks. When I get sick, it will be for a lot longer than others. “I’ll never be able to work a full-time job.” I’m OK with this as well; I still have the ability to work. I can choose something I enjoy.

My symptoms list actually takes up a page. I’ve learned to live with these. The muscle fatigue, aches and pains, the dry skin, the hair that is always falling out, the indigestion, bloating and stomach pains, the brain fog, the headaches, the anxiety and depression that fluctuate with my thyroid levels, the heart palpitations, the emotional outbursts, weight gain — which is then almost impossible to lose, being so hungry one day, and not eating the next, and the overwhelming tiredness that follows me everywhere I go.

“I’m so tired.” This has almost become my mantra. It’s often met with “Me too,” but I don’t think you understand. I don’t mean tired, I mean I had to fight to get out of bed this morning. I had to convince my muscles to move amidst aches and pains to walk from my bed to my kitchen, so I could take my medication, so I could keep going another day. I had to fight to make breakfast; today I managed toast, and I sip my coffee and eat while my brain fuzzes. Just a bunch of white noise for my first few hours of the day.

I fight to get dressed. I work up the energy to leave my house. I worry I’m not awake enough to drive. I make it to work, and my legs are aching, and my arms are heavy, and my head hurts, but I smile and say hello. My colleagues ask if I’m OK, if something is wrong today. Sometimes I’ll answer, tell them I hurt everywhere, or that I’m having a hell of a time staying upright at the moment, but for the most part, I’ll just say, “I’m tired.” I make it through my day and worry I’ll fall asleep driving home. I walk in my door, and there’s washing that needs doing, folding that I’m ignoring, and the washing up still needs to be done. Sometimes I sit for an hour trying to find the energy to start on a task; sometimes it takes me that long to go for a shower. On bad days, I end up on the floor of my shower because I can’t stand any longer. My body literally gives out on me. Eventually I find it in myself to get up again.

Getting dressed again seems like a mammoth task, and I still need to make dinner. If I eat the easy-to-prepare or quick meals, they’ll make me sick and more run down, so it’s a full effort meal. I fight to cook as well. I try for leftovers as often as I can, just to make sure I eat well. This leaves me with just enough time to rest for the next day. I attempt to sleep as my legs continue to ache, the muscles reminding me just how much excess standing I’ve done. They make it impossible to fall asleep straight away. My brain races at night, all that fogginess and it can’t block the thoughts that remind me of all the things I dream for, that I may never have because my day causes me so much hurt.

I don’t get to enjoy the things I love, because I’m too busy surviving. I’ve used all my energy on the things I must do, and I miss out on the things I want to do. And my heart breaks a little each day that goes by. I mourn the life I had; I mourn the youth I lost, the life I thought I would get to live. I’m a dreamer by nature, a creator, and my dreams have been sucked up by this disease. It takes away my drive, my energy, my ability to be a bundle of life.

I search for hope. I remind myself to be happy, to put effort into things that aren’t work. But there’s only so much you can do. I still have bills to pay, I still have a house to clean and I still have a chronic illness. I try to make new dreams, ones that I can follow. I focus on family, on the friends I’ve managed to keep, and the love I still have. These things get me through each day, the people that surround me and support me, and the idea of a future I can live in, not just survive.

I suppose I’m writing this so you know I haven’t given up. I’m fighting with everything in me. But sometimes, all that fight only gets me from my bed to the lounge. Other times, I get to have my adventures. Please don’t ever think I’ve given up. Even if I drop off the face of the planet for a while, know I’m fighting as hard as I can. I won’t give up my ability to live my life. It’s just going to look a little different than yours, and that’s OK. Just be there with me while I do it.

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