My Journey With Autoimmune Disease
March is Autoimmune Awareness Month.
As someone who creates content online and has always been vulnerable with what I choose to share, opening up about my journey with autoimmune disease has been difficult. On one hand, I was hesitant to claim that I have an autoimmune disease, especially one considered a disability. I thought that if I claimed it, somehow I would be attaching it to my identity, and then it would live with me forever.
But on the other hand, there have been many times I’ve felt alone and depressed due to the lack of community I have in this space specifically. Sometimes I look for those with stories like mine, just to be even more discouraged when I see they haven’t found any healing or relief in decades.
When bringing this up with my therapist, we discussed how autoimmunity doesn’t have to be my identity for me to share it. Since writing has always been a way for me to deeply express myself, I figured my blog would be the perfect place for this to live.
It all started in 2016 when I decided to be a bikini competitor. You can read my full blog post from 2019 when my symptoms were at their peak, but I didn’t know then half of what I know now. To summarize it, I overworked myself into sickness - between being in grad school, juggling multiple jobs, going through a breakup, and being a fitness competitor. My stress levels were at an all-time high, and while I looked amazing on the outside, my nervous system did not feel safe.
6 years later, I still deal with the effects of the havoc I wrecked on my body. I’ve tried to forgive myself many, many times, but I still hold onto some guilt that this was my fault. After seeing multiple doctors, performing hundreds of tests, and spending thousands of dollars, I’m finally at a place where I can identify everything going on - I just haven’t overcome it… and there’s a chance that I won’t.
The above video goes into detail on the functional medicine practitioner I’ve been seeing for two years. While I’m not where I want to be, I have to give myself credit for how far I’ve come. Without the help of Parsley Health and the amount of testing we’ve done, I would probably still be in the dark about so much.
Many people who have one autoimmune disease often have another, which in my case is true. While this often makes it extremely difficult to diagnose, I try to remember that my body is the greatest healer and is communicating with me for a reason.
So let’s dive into my current state:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
My symptoms began with severe exhaustion. And I get it - we’re all tired from our day-to-day lives, but I knew this felt different. Currently, going on a walk through Target results in me feeling sick and having to take a nap. Any physical activity - working out, running errands, and even sex - result in post-exertional malaise (PEM). I develop flu-like symptoms for 12-48 hours, and in the morning I’ll wake up with my body feeling extremely heavy like I have a huge weighted blanket on me. This has been my reality for the past 5 years.
Other symptoms include depression, brain fog, cold intolerance, dizziness, lack of concentration, or sex drive. Increasing my vitamin-D intake and therapy has helped with the depression, but the other symptoms are still prevalent in my day-to-day life.
I haven’t been able to work out in years, which has done way more damage than just to my physical appearance. All the progress I once made as a fitness competitor is gone. From the outside, sure I look skinny and it can’t be that bad, but not having the ability to move my body has brought me to some dark places. Besides not feeling great about my appearance, I often wonder what the future looks like for me. When I have a baby, will I be sick from picking them up and putting them down constantly? Can I even go for walks while pushing a stroller? Never mind the fact that I have 2 uterus and 1 kidney…
To my knowledge, there isn’t a “cure” for CFS or PEM, there are just ways to manage it. I try to go for walks with my dog, for example, I can manage a quarter mile and sometimes even half… but if I overextend myself on the wrong day it’s like taking 10 steps back. My workout routine now consists of using a resistance band for 3 minutes, and even that can be too much on most days. I don’t want to sit back and do nothing, but I also am so fearful of having a bad crash that could disrupt my life. While the crashes have me in physical pain, my mind begins to spiral out of control with negative thoughts.
As soon as my crash is over, I have to gather up the strength to do it all over again.
Hashimotos Disease
I was also diagnosed with Hashimotos, an autoimmune disease where the immune system attacks the butterfly-shaped gland in the neck. Similar to CFS, symptoms include depression, muscle aches, difficulty concentration, cold sensitivity, etc. I’ve also developed fairly severe food sensitivities, which I why I don’t eat gluten or grains. I’m currently on Amour Thyroid, a daily medication I take to support my thyroid, but this is still a work in progress. There is no cure for Hashimoto's, but replacing hormones with medication can regulate hormone levels and restore your normal metabolism.
If you’re looking for a complete thyroid panel test, the above were all the ordered items included in my bloodwork done at Labcorp.
Adrenal Fatigue
Remember when I said my stress levels were so high at one point? Well, they were so high that when I finally gave my body the time to relax… they just never recovered.
Below are the results of a test I took of my cortisol levels. You can see in the green where my stress levels should be during the day, and the reality of where they are. When I said it’s hard for me to get out of bed in the mornings, I mean it.
In advanced Adrenal Fatigue, cortisol levels are diminished and not available to effectively downregulate an overactive immune system. Therefore, the immune response can progress unchecked from stage one to stage three, inflammation can occur, and it should come as no surprise that people who are predisposed to an autoimmune disease also have weak adrenal function.
While some argue that adrenal fatigue isn’t real, I know what feels real to me. There are things that can be done to support the adrenals (for example it’s 9:30 pm so I should probably get to bed), but again… it’s overwhelming.
SIBO
While not an autoimmune condition, I was also diagnosed with SIBO (small intestinal bacterial overgrowth) which is an imbalance of the microorganisms in your gut that maintain healthy digestion. This happens when too much bacteria, or the wrong kind, populate the small intestine. Interestingly enough, many of the things that cause SIBO were the exact things I was doing during my competition prep: over eating, not giving my food time to digest, eating late, not giving my gut diverse foods to support the microbiome. While SIBO can be cured, it can also come back which is what I’m currently dealing with. Each treatment includes rounds of antibiotics and herbal supplements. While it sounds easy, the experience is tedious, especially when considering all the food you need to incorporate to support this detox.
Right now, my doctor and I are focused on the following: getting rid of SIBO and finding the right thyroid dosage for my body. Gut health plays a critical role in how your body functions, so if that’s not in check, we can’t expect to see progress in other areas. We’re also focused on liver support, as a recent Mycotoxins test showed that I had exposure to black mold at some point. Mold exposure is just… a whole beast within itself. Beside my 1 thyroid medication, I take around 22 supplements throughout the day from iron, vitamin D, magnesium, liposomal glutathione and more.
The above shows my results after taking a Mycotoxins test from Vibrant America. Stachybotrys chartarum is toxic black mold. Exposure to this can cause central nervous system manifestations like headache, irritability, lightheadedness, sleeping difficulty, concentration problems, and mental fatigue.
I’m informed and lost. Supported and alone. Hopeful and scared.
I wish there was a magic routine I could follow that would tell me exactly what I need. I wish I could go back in time and prevent myself from that burnout. I wish I could break the cycle that there’s “always something wrong with me”, even though I laugh it off when my friends and family mention it. I wish I could go out to dinner and order whatever is on the menu, and not starve myself because there are no gluten/grain-free options. I wish I could go for a long walk without crashing afterward.
I mourn the life I used to have while also mourning the life I want for my future.
If you’ve made it this far, thanks for reading.