“My name is Heather Bickel Stevenson and I am an RN/counselor/coach and Spiritual director. I wanted to share my story with chronic illness in a nutshell, if that is possible.
I had a TBI when I was a freshman in college and that damaged my ability to sleep at all. That severely compromised my immune system and I was more likely to get sick after that. During college and afterwards, as well when I was a child… I have had multiple tick bites. I managed to get through college, nursing school, as well as do my masters in counseling during a long season where every day I felt a level of exhaustion that no one really believed nor understood. I would drink coke every day to just ‘make it’ through the day… and then face night after night of no sleep.
Fast forward to 2012, my wedding day. I was 36 and this was a LONG awaited celebration to finally get married!
The day after my wedding, I basically collapsed with infection after infection, only to be told it was in my head or that I needed to work less. I worked with over 20 doctors as an RN, but no one really took my condition seriously. I was suffering so much and knew deep in my heart that something was not right.
Finally in the fall of 2013, an amazing MD (I call her a master detective) tested me for multiple things. What came back was Lyme positive along with 2 co-infections, Active Epstein Barr and a serious mold toxicity. We were living in a lot of mold in an old house in Philadelphia, but I had no idea how much it was affecting me. We were told to move out within 2 weeks.
After living temporarily here and there, and not having the ability to go back to work during Lyme treatment, as I was so sick… we eventually moved to San Diego as I wanted to see a Lyme doctor there. We had a lot of other reasons to move there as well.
After I while, I figured out my own treatment plan (that is a long story), I began to feel better and was able to start doing spiritual direction again and work with an essential oil company. Things were stable for a few years.
Then we moved into a home that we did not know had mold. I felt weak in my body again but didn’t know what the cause was. I was so discouraged. Then in 2020 when we needed to stay home 24/7 due to the pandemic, I got really sick. My guess is it was the mold first (which we had to leave our home during the pandemic and move into a hotel). After living in a hotel for a few weeks, we went on to stay in 12 other places within 2 years. My husband moved us pretty much on his own each time. It was sooo hard. During this time frame, I was also diagnosed with POTS, IBS, MCAS, CFS/ME, outlet dysfunction, small fiber neuropathy, and it goes on and on. I had 18 doctors, weighed in my 80’s, was in pain when I laid down as I could not have a bowel movement, but when I got up, I had no blood flow to my brain and could not think. I honestly wanted to die. My dear husband and my faith were all that kept me going to doctor after doctor, dealing with medication errors and nightmare like situations with insurance and bills. It was extremely dark and my world became oh so small.
Then at the end of 2022, I found out my mom was really sick and I needed to fly across the nation to take care of things with her. By what felt like a miracle, I made it across the nation and was able to care for her. It’s like my body kicked into some other gear and I knew I just needed to do what had to be done to assist her and my dad.
I am still not entirely sure how I went from being so unhealthy to now caring for my mom and working again. I think it was a cumulation of lots of people’s prayers, adrenaline with seeing my mom so in need of my care, the right mix of doctors, and honestly letting go of 15 out of my 18 doctors. I know that there are still things that are happening in my body and the POTS and CFS/ME is still bothersome on a daily basis, but I have found reasons to fight and a deeper desire to live and to live as well as I possibly can!
For most of my illnesses, I have felt unseen, unheard, and unknown. Not that this was anyone’s fault. I believe people honestly were afraid that I was dying and no one knew what to do. Friends did a ‘go fund me’ to help pay for medical bills, my husband didn’t leave my side (and would even change my IV’s and disconnect them when they were finished) and we had a caring bridge to keep people updated. It made me feel loved that people wanted to read that. I also had a group of 5 ladies that I could text and be super raw and vulnerable with. Without this, I don’t know if I would have made it. They really showed me love.
The ways I cope with my illnesses are sharing with people close to me and taking as good of care of myself as I can. I still cannot work as an RN but I do holistic coaching for others online and this keeps me going. Overall these days, I am focusing on caring for my mom, journeying with others and seeking to be the best version of me I can be. I am honoring my own limits and saying ‘no’ more often than I ever did before.
I wish as a chronically ill person to not hear things like, ‘Are you better yet?’ or ‘You don’t seem sick.’ I wish that the people I used to pursue as friends, would pursue me. Especially when they have not heard from me and to also not feel so isolated. I wish that doctors in the Western Medical System would be trained in medical school how to treat and care for people that are chronically ill and that health coaches/guides/counselors would be covered by insurance so that we would not feel so alone in battling our illnesses without support.
These are the reasons that I provide coaching/support/mentoring for others with chronic illness, because I don’t want people to feel alone or unsupported like I did.
I actually ended up writing a book this year (2023) and talked a lot about my illnesses and having a ‘Brave Voice.’ That has come up in learning how to speak up for myself but also in being an advocate for other patients. I also work with a lot of women in destructive marriages, and I feel they are seeking to find their ‘Brave Voice’ as well.
I hope my story encourages someone. I have an IG page @healthyandwholeforbodyandsoul. If I can ever be a listening ear for someone else.”
Heather
Atlanta, GA