After being diagnosed with an autoimmune disease, I was amazed at the amount of support from the online community in giving me different resources. Because of this, I am doing a series where other bloggers with autoimmune diseases share their perspectives.
You’d think that by my late twenties, I would have had a solid understanding of the fact that life doesn’t always go as planned.
But there I was, twenty-eight and a half years old, almost at my due date with my first kid, and still holding on to the dream that everything was going to go just as I’d imagined it.
I had accepted any odd symptoms that had come up as the price you pay for pregnancy. I had prepared for a natural, unmedicated birth. I had gone to my ob/gyn regularly, kept her updated on anything that could even be considered the slightest bit abnormal (cuz that’s what you do when you’re a paranoid first-time pregnant lady). I ate a fair amount of vegetables along with all the chocolate I was always craving, and on most days, I managed to still get at least 7,000 steps in.
I was doing (most) everything right. So that must mean that everything would happen as planned.
Well, I had the natural birth. However, I hadn’t anticipated the life-threatening scenario at the very end of it.
I had the typical sleep-deprived, out-of-whack hormones the first week postpartum. But I hadn’t anticipated the trip to the ER with chest pains that same week, prompting the removal of my gallbladder the following week.
My skin was rashy and itchy, but I’d had eczema my whole life, so I slapped some topical steroid cream on it and tried to move on with my new life of diaper-changing and baby-feeding and spit-up-cleaning.
My muscles were aching and weak; my arms barely able to lift my new daughter in and out of her carseat or carry her up the stairs without me crying out in pain or fatigue. But I was a new mom…this fatigue was normal.
In hindsight now, all the symptoms seem so obvious that I wonder how on earth I could have brushed them off for so long. But the truth with many autoimmune diseases is that because there are so many different types that manifest themselves in so many hundreds of symptoms, people can go years and years without getting a proper diagnosis.
Luckily for me, I wasn’t one of those who had to wait so long. (Thank goodness, too, because my propensity for ignoring important symptoms and signs was approaching dangerous levels.)
I was diagnosed with my autoimmune disease–dermatomyositis–at the beginning of July 2015, when I was about two and a half months postpartum. What had started as a trip to the doctor for my annoying skin rash ended up, just two visits in, as a diagnosis that would change the course of my life.
I wasn’t going crazy–my feelings of fatigue and muscle weakness and this unconquerable skin rash weren’t just typical symptoms that came from being a new mom. And, best of all, they were treatable!
Initially, I felt like laughing with relief that all of it added up to something that had a name and that had a treatment, even if it had no known cause.
Once I got into my treatment, however, I felt much less optimistic. The side effects of the medications I was on–prednisone and methotrexate–were severe and unpleasant, and they only seemed to worsen while my autoimmune ilness symptoms only gradually started to get better.
True, I was able to once again hold my daughter without so much pain, and my doctor had tentatively given me the go-ahead to start running again. Indeed, the muscle-weakness aspect of my disease seemed to respond much more quickly to treatment than my skin did.
I remember that the first summer of being a new mom, I largely avoided going outside, not only because my doctor had told me to strictly avoid the sun as much as possible, but also because I got frequent comments about my rashy red arms, chest, and shoulders wherever I went, and it was simply too hot to go everywhere in long sleeves. Additionally, the steroid I was put on (prednisone) made me gain weight in my face and neck, and I felt supremely self-conscious and not at all like myself. And, although I didn’t get comments about my rounder appearance as frequently, when they did still come sometimes, it always felt like a sharp sting when it happened, as if I’d been whipped in the face.
There were a lot of lonely weeks that summer while I fought to keep my sense of self while accepting these two huge new parts of my life–both becoming a mother, and living with a chronic condition.
But very soon after I got my diagnosis, I had made myself a promise that I intended to keep—
I promised myself that I wasn’t going to let this disease define me or my life or my dreams. At the time, I largely had my passion for running in mind (since one component of dermatomyositis is that your body’s muscles attack themselves), but I soon saw that there was much more hanging in the balance than my ability to run long-distance events again—
My treatments affected so many parts of my life, including my energy levels, my mood, my appetite, my ability to think clearly, and my body image. I thought I had mostly figured out who I was by that point, but redefining so many things that were such a big part of my life (like being a fit runner and a quick thinker and an overall super motivated person) made me stop to see my worth from a much different angle.
There are two components to my autoimmune disease—the muscle weakness component and the skin rash component. My muscles were declared to be in remission from the disease all the way back in January of this year, when I was finally able to be taken off the steroid. My skin has taken much longer to respond, but I am hoping that at the end of this month, at my next doctor’s appointment, my skin will be declared to be in remission as well.
So, you could say I am (hopefully) at the tail end of this thing, or at least at the tail end of this particular flare-up of the disease.
And I’ve learned a lot.
If asked to give someone in a similar situation as myself advice, I would offer these three things:
1 – Research your treatment options.
I was just so relieved that my symptoms had a name and a treatment that I didn’t think much about the powerful effect those medications were going to have on my body and on my mood and mind. About six months into doing the traditional drug therapies, I grew so tired of how I felt on the medications that I did an elimination diet and ended up cutting out gluten for about four or five months, which helped me see much more drastic improvement than I’d seen previously. I only wish I would have researched other things like that sooner so that I could have possibly cut my time on the meds in half, or even shorter.
2 – Don’t pile on needless guilt over things you have limited control over.
When I was put on the methotrexate, I had to wean my daughter over a period of about a week prior since you cannot breastfeed while taking it. I felt enormous amounts of mom guilt over this initially, but when I saw that she thrived just as much on formula as she did on breastmilk, I finally learned to just let the guilt go.
In a similar vein, there will be certain activities or things you just can’t do while you’re in the middle of treatment. For me, I often couldn’t make it through all three hours of church since I did my big treatments on Saturday night/Sunday morning. So I just made it to the first hour much of the time. I did what I could as well as I could, but I finally had to learn not to push my body too hard because that could just cause a flare-up all over again, so I learned to rest and to really take care of myself instead of always trying to push through. This thinking also had to apply to things like housework or extra meetings or pushing myself at work.
3 – Ask for help.
Although family and friends were supportive and loving, many of them didn’t live close enough to help out with the stuff that was difficult for me, like having the energy to keep the house clean or taking the baby so I could rest. Because in many ways I seemed so normal on the outside, they honestly probably just thought I was doing okay, which meant that much of the burden fell on me or on my husband when I was having a rough time.
I wish that I had been better about saying, “Hey, I could use some help with this or that” or opening up more to people who could understand.
A few months after my diagnosis, I went back to work as a full-time teacher and learned that the teacher in the classroom right next to mine struggled with lupus. What a relief it was to have someone so close by who could understand much of what I was going through! I only wish that I hadn’t let myself become so isolated during the thick of it all in those first few scary months—I think I would have had an easier time of it if I’d just let myself reach out and get help.
Now, as I am hopefully just weeks away from being declared in full remission, I can see that my life still is what I make of it, and that it definitely doesn’t have to be limited or defined by my disease. But I can also see that this disease is now a part of my life, so I need to take steps to care for myself the best that I can so that it doesn’t have to completely take over my life.
This may not be something that I planned for in my life, but it now does need to be something that I plan for.
Torrie blogs over at Autodidactic Ambitions and recently quit her teaching job to be a full-time stay-at-home mom to her daughter, Raven.