The Long Road To Accepting The New Me: How an Autoimmune Disease Erased My Identity, and How I Got It Back
Less than a month after my 30th birthday in 2009, I completed what I thought would be my first marathon. It had been a dream since my days of being a high school cross country runner and I was so proud.
After that, I kept running, thinking I was in the process of training again for another marathon.
I also changed my whole life. See, I was in a terrible situation for many years. I had three small children, all under age 9, and I was in a physically, emotionally, and financially abusive situation that it took several years to be able to leave (because I was the only person providing for my children). However, I was fiercely determined.
In June of 2009, I finally was able to get us out. It was wonderful to be free.
Then, in late 2010, I met a man I was just crazy about and fell in love. We got married in the Summer of 2012 and bought a house and everything was just a dream.
The first sign that something was off with my body came exactly a month after we got married.
In August of 2012, a few days before my oldest daughter’s twelfth birthday party, I suddenly became terribly ill. I was in bed, weak and feeling short of breath. As a nurse, I self-diagnosed some sort of non-cough variant pneumonia or something of the sort (because I was exposed to germs all the time back then but never got sick) and finally hauled myself to the emergency room where I was found to be profoundly anemic due to a GI bleed.
It took several weeks and lots of sorting to determine that undiagnosed celiac disease was the cause.
Of course, I switched to a gluten-free diet and expected that my problems would be over.
However, slowly, other health problems entered the picture: worsening fatigue, knees constantly burning, severe morning stiffness.
In 2013, as doctors were trying to get to the root of the problem, I was placed on a daily dose of prednisone, a steroid with some gnarly side effects, such as weight gain, hot flashes, mood swings, and bone thinning with long-term use.
By 2014, my symptoms were still getting worse. My hands swelled and did not work well, I was having difficulty making it through my shifts, I was experiencing falls at times, my lower spine constantly hurt, and fatigue haunted me. My steroid dose kept going up, up, up.
I was then diagnosed with rheumatoid arthritis. started to feel like a walking science experiment as we tried different medications to slow down my disease process with limited success. All the while I remained on the steroid therapy.
As a result of the prednisone, I gained a significant amount of weight and my bones began to weaken.
By the beginning of 2017, I was much sicker. Arthritis was also in my hips at this point and I developed the first of many stress fractures in my feet as a result of the steroids.
In July of that year, I had to stop working as a nurse altogether. I had multiple broken bones in my feet that wouldn’t heal – and still to this day won’t – in addition to other RA related issues.
Not only was the loss of my income a terrible thing for my family and an awful stressor for my husband, I was also reeling from what felt like the loss of a large part of my identity, having been a nurse, caregiver, and healer for so many years.
And, though my husband and family are absolutely wonderful, I also found myself struggling to cope with being totally financially dependent for the first time in my adult life.
As for my running dreams? They were long gone – and dearly missed.
Hell, my disease has progressed to the point that some days now I have difficulty getting out of bed, even with a rail beside my bed to help me. My hips are prone to locking up. My knees throb. The bones in my feet break without warning.
Still, I am truly not bitter about my situation but it is incredibly hard to process some days.
I am only 39 years old. I never imagined at this point in my life that I would be considering hip replacements – because they will come sooner rather than later for me – or that last Fall I would have had to shave my head because one of my medications was causing all of my hair to come out in clumps (and I am so thankful it is coming back now) or that I would be accepting that I really will have two broken feet for the rest of my life because I am not a good surgical candidate for many reasons.
Some days I can’t get my pain under control at all and I just sit and cry.
And then some days I just have to sit and cry over the enormity of it all anyway. It isn’t all bad though.
I was able to go back to school online to the Institute of Integrative Nutrition to be a Health Coach. I felt that a health coaching certification, combined with my nursing degree, and my life experience with autoimmune disease would let me start a super helpful coaching practice and I am working on it. It’s taking time but I know I have so much to offer other people after fighting through all of this.
It’s my best opportunity to make something good from my own suffering and still be a healer, even if it is in a different way.
And I recently saw something in the Netflix documentary, End Game, of all places, that really helped me stop fighting my body and accept where I am. Dr. BJ Miller, a triple amputee due to an accident at age nineteen, said:
In my own experience, it took me several years before I stopped comparing my new body to the old body. But when I did stop comparing -- when this became the whole me, not me missing stuff, I stopped suffering. My identity had accommodated the facts of my life. So, I like thinking about suffering as a gap. Like a wedge. The gap between the world you want and the world you got. You know, that to me, sort of sums it up very nicely.
When I heard this, and really took it to heart, and accepted my RA body as the whole me, I was overcome with the most amazing peace. There are still days with tears – and I expect there always will be – but I no longer feel broken or incomplete.
I’m just me again.
And for that, I am so thankful.
by: Miranda Herring