Life With an Autoimmune Disease
I felt like this would be a good time to kind of explain how autoimmune diseases can impact life. I don’t know what my autoimmune disease is, just that I have it. When I was little, around 6, I got sick. Very sick. It was around the time that Lyme Disease was highly publicized. My doctors felt that I probably had Lyme, but my tests for Lyme came back negative time and again. They decided to treat me as if it were Lyme, which meant antibiotics for about a year. My parents fought the doctors for a diagnosis. I went to U of M Hospital, I went to a hospital in Wisconsin, no one could figure out what was going on. But my parents fought long and hard for me. I remember being in complete shock when my mom yelled at my doctor. Because my mom doesn’t yell. And definitely not at a doctor. But I was utterly dismissed. I was 6 and struggling with debilitating exhaustion, double vision, rashes, joint pain, etc, and the doctor, unable to find an answer, decided that I was probably making it up for attention. That was the beginning of my uncertainty of doctors.
My symptoms went into remission, and I really didn’t think about it again until I got sick again when I was around 20. I went to the doctor, and got no answers other than that I was likely unable to get pregnant without medical intervention (which not only was completely false, but also not why I was there, and no testing was done for that, so why he felt the need to tell me that is beyond me). My hormones were not balanced with each other, but each was “within normal range” individually. So, he wouldn’t even address that, saying there was no issue (other than, you know, that I wouldn’t be able to conceive naturally. Which, again, was completely false). I kept going back and asking for referrals. Finally, to get me to shut up, he referred me to a couple of specialists. One was not helpful at all. At all. She told me that my adrenals were not functioning properly, but that there was nothing that could be done. The other did some tests and found that I have an autoimmune disease. It was, at that time, destroying my thyroid, but it was not Hashimotos. He told me that he didn’t know what it was and that he’d not seen in before. What that meant was no diagnosis. An autoimmune disease and no diagnosis. Which meant that doctors to follow wouldn’t acknowledge it.
Again, it went into remission until I was about 27. At that point I was doing extended crossfit 4 days a week, sometimes 5, and was eating no-carb Paleo. Just meat and eggs. You know what one of the doctors suggested after I explained that to her? She suggested I stop lifting weights and increase the cardio, because lifting weights “makes you gain weight,” and she told me to reduce my carbs. I was already eating ZERO carbs. I was so exhausted I couldn’t function. I went to work and came home, a single mother, and laid on the couch until I put my daughter to bed, and then I went to bed. I was a terrible mother. But I needed to work to support us, and I was so drained that work was more than my body could take. When it first started, I thought working out more and restricting my calories was the way to counteract my weight gain, which was happening out of nowhere, and my fatigue. I was wrong. I spiraled downward quickly.
I finally got my hormones balanced, and my HPA axis working as optimally as possible, and my thyroid and autoimmune disease seemed to be relenting. And then I found out I was pregnant with my little surprise. That kind of threw me out of whack all over again.
My current doctor diagnosed me with Hashimoto’s last year, mostly just so that I’d have a diagnosis. It’s not truly Hashimoto’s, and I don’t really have any course of action or any idea of what to expect. I am allergic to gluten and casein, which my doctor suspects is due to my autoimmune disease, as those often go hand-in-hand. So for now I just try to take care of my body as much as possible and avoid pushing physical limits.
Saturday, I did the March For Our Lives march, locally. It was a gathering with some speakers, and then a walk around the park. It was very cold out and incredibly windy. The walk was brief. But when I got home I was so wiped I couldn’t function. And I couldn’t get warm. My husband brought my heated blanket down for me to try to warm up with. But I was out of it and my patience was at an all time low. I went to bed. And I stayed in bed until the next morning. An autoimmune disease and adrenal dysregulation can wipe you out so much that you can’t function. That you can’t be a mother or a wife. That you can’t be anything.
It’s frustrating. And it’s embarrassing. And it’s saddening. And it makes you feel like you’re not a worthwhile person. Because your body is literally failing you, but you’re not terminal. It’s not cancer, it’s not a visible illness or disability, so you just look lazy. And so you feel like you’re just lazy. And that is really hard. My husband is very understanding. He let me rest. He is supportive. But I know it has to be frustrating for him. And I know it must be annoying when I look fine, but can’t get out of bed. I’m lucky because it’s not every day for me. I’m always tired. I’m usually quite fatigued. And that definitely impacts my life and what I can do. But it doesn’t usually leave me in bed all day.
I have this beautiful family and this beautiful life, and I feel like I am letting them down all the time. Not because I want to, but because I don’t have the energy, and with that I lose my patience. I start each day off with the energy and restfulness that most people end their day. By midday I am exhausted and truly just am counting down the hours until we pick up my 9 year old, which is a break in providing my 13 month old with my undivided attention, and then about 40-50 minutes after we get home my husband gets home and relieves me from the baby. How awful is that? I look forward to being relieved of parenting. It’s a horrible feeling. I don’t feel like I deserve to be the mother of these awesome girls. I have to remind myself that I’m doing the best that I can and that I’m not just being lazy.
This is where acts of self-kindness come into play. I have to actively remind myself that I’m not lazy. That I’m not worthless. That I have a body that doesn’t work the way that it should; that is literally attacking itself. That the best thing I can do for my girls is to take care of myself as much as possible so that I can present them with the best mother I can possibly be. But that’s not an easy pill to swallow. When you feel so tired and sore and drained all the time, it’s hard to remember to be kind to yourself. You feel like not only do you not deserve it, but that you’re selfish and self-serving for even considering it. We live in a society in which mothers are supposed to be and do everything. And do it tirelessly. When you physically cannot, and you don’t have a visible disability, it really makes you feel like you’re undeserving. Like you’re lazy.
That, in a nutshell, is life with an autoimmune disease.
***I am not a medical doctor and nothing in this blog is medical advice or to be used in lieu of medical treatment or advice from a doctor.