I just wanted to scream. It had been five years of going to doctors before I finally found out what else was wrong with me — my newest diagnosis, small fiber neuropathy (SFN).
The doctors put a name to my intense pain in August 2020, after a skin biopsy from my left ankle and left hip. And after five years of advocating. I pushed. I believed in myself when no one else did. I researched. I held tight to what I understood — my body was telling me that something was not right.
I had been to doctor after doctor, brought up symptoms when I wasn’t even sure which symptoms went together. I was just…dismissed. When I originally went to see my neurologist in 2017, I was told I did not have multiple sclerosis, but I had some balance issues — and I was fine. He sent me on my merry way. This was the same doctor who ultimately diagnosed me after my pain management doctor saw all the neurological symptoms and sent me back to him for a full work-up, pushing multiple times for me to be taken seriously.
Inflammation from my autoimmune disease (I was diagnosed with rheumatoid arthritis in September 2011 and fibromyalgia in January 2012) did not cause joint damage, instead it targeted my nerves, and my autonomic system. Small fiber neuropathy occurs more often with diabetes, Lupus, or Sjogren’s than RA.
At this time, I also learned that by treating my RA and fibromyalgia, I had already tried all of the first-line treatments and pain medications for SFN — there was only one more to try. The drug was newly approved by the FDA, and I wasn’t even sure if my insurance was going to cover it. It took a year and a half — but I’m finally on the treatment and will remain on it for the rest of my life.
But my new condition isn’t the most important part of my story.
The Mental Toll of Another Diagnosis
My whole world was flipped upside down. Again. It felt like being diagnosed with rheumatoid arthritis the first time, when I had a panic attack a month afterward from all the choices and changes. I knew how to see patterns, handle my symptoms, listen to what my body needed, care for myself with my autoimmune diseases. But this? It was constantly evading me, biting me, scratching me, making me bleed.
This new diagnosis was absolutely overwhelming. It broke me. I felt physically crushed for well over a month. I had done the right thing by pursuing it. And I was right, something was very wrong with me beyond my RA, my fibromyalgia, and multiple other issues I have. But suddenly being right became a sad and terrible thing for me. Then I crashed. Mentally. Emotionally.
Very few people knew what I was going through. They did not know the unimaginable pain I was enduring; the pain that was far worse than any flare or joint pain I had ever experienced. Almost no one knew that I pushed through and held out and managed the anxiety attacks from that pain with help from therapy. People were oblivious to the fact that I experienced specialist after specialist who didn’t understand or know what was wrong, to only send me to someone else or just shrug their shoulders and write me off.
I was alone. I was in the dark. I was trying to manage progressive symptoms I did not understand. When I spoke to other patients, no one heard of my symptoms or understood what was happening to me either. I had people back away from me out of fear because they did not understand how to support me or what to say. I got pity from others, yet my few faithful stuck by me even though they didn’t always know how to help or what to say.
Once I knew about my SFN I began to search for a community of people who also have it, who understand how it progresses. I wanted to find other patients who knew what I was going through. I spoke out and was open about my new diagnosis. But SFN is rarer. And the community is very small, scattered far and few between. I had hopes for finding a community quickly, but that was soon dashed. Instead, I was frustrated time and time again. Even in obscure places using hashtags that connect with folks who have rare diseases I found almost no one. To date, I have found about 15 people diagnosed with it across several social media platforms. And no one as severe as me.
Dealing with My Feelings — Despite What Others Tell Me
In all of this, what I was not ready for was the unwanted, unrequested, and unwelcome advice to not deal with my feelings and pretend like everything was going to be okay. I encountered platitudes. Trite sayings about “everything happens for a reason.” Encouragement about learning from my situation, my loss. I was pushed to smile. Sometimes I just heard the “Aw, you poor thing,” which is so insulting and close to the southern saying “Bless your heart.” I wanted to scream.
I grew up in a household of neglect and abuse. My siblings and I were not allowed to discuss our emotions. The only person’s emotions who were important were my mother’s. Emotions were not expressed. They were stuffed down, held back, kept secret. If immediate family asked about how much food we had or how things were going my mother instructed us to lie. If church members asked us personal questions we also had to lie. On top of this, no one was supposed to mention the hurt when my dad left or when my parents got divorced. I was 5. Life just got more difficult from there.
The tension from our pent-up emotions got more and more wound up. The best way to explain it is by using an analogy of a tow truck winching a car by two wheels that was heavier than allowed. You knew the truck would make it; it was definitely heavier than the car. But the car? With the squeal of metal, the car slowly made it up into the air when no one thought it would. Suddenly the tension was too great, and the chord snapped in four places dropping the car front first onto the ground crumpling into itself like a crash dummy simulation. The air bags deployed. The windshield crackled then splintered into multiple pieces. The front seat and back seat squished into one another so that there was no room, just trunk and seats and suffocating air bags with glass everywhere. Pieces of the car were embedded in all the onlookers. But the car was never to be repaired.
It took me a long time to repair the emotional damage of my childhood and to become resilient, strong, and capable, regardless of the circumstances. When I encounter a situation that is disappointing, difficult, or not what I expected, I don’t want to act happy. I do not want to be told to look on the bright side. I refuse to smash my emotions down inside myself so I can put on a happy face and make other people feel better. I will not pretend like I have learned a fantastic lesson when my body and my life are falling apart in this moment — and I need time to cry and scream into a damn pillow.
I understand who and what I am. I know that I need the time to be hurt. To be sad. To be broken and grieve. I will make the space for my emotions so I can heal. There is nothing wrong with how I feel. My feelings are neither good nor bad. They just are. I also understand that they are not permanent. I know I will get up again, even if I am covered in bruises, have a fat lip, a sprained wrist, and a broken leg. I will still fucking stand up. And since I have anxiety and depression, I know what my signs and triggers are. If I stumble or fall while trying to stand up, I know when to reach out for support. I began therapy because I knew I needed the help.
What I Don’t and Do Need to Hear
Below is a list of toxic responses I have been told over the years — ones that have made my difficult situation worse and ones that don’t allow me to grieve or process my emotions. They don’t allow me to be honest about what is really happening to me. Instead, they stick a band-aid on a gaping wound and push me out of a moving car. It is toxic positivity that helps no one.
- Everything happens for a reason
- This is no big deal. You got this!
- Look at this as a learning experience.
- That which doesn’t kill you makes you stronger.
- This happened to you so you can be an inspiration to others.
- Pick yourself up, dust yourself off, and keep moving.
- It’s not that bad, you have been through worse.
- You are resilient – this will bounce right off of you.
- Don’t feel bad. You are too good for them anyway!
- Try to look at this in a positive way instead of being so negative.
- If one door closes, another one opens.
- You need to smile; it will brighten your day.
So, I would love to normalize a few important things in the patient community. I know outside of our supportive space it can be difficult, but the hope is that if we model this behavior then maybe it will catch on. If I tell someone I have not gotten the job I interviewed for, have been diagnosed with something new, lost a friend, am struggling with bills, or have to make a huge decision about medication — these are the types of responses I would love to hear:
- Oh wow, I am so sorry.
- I know this is difficult for you. I am here whatever/however you need.
- Before we go any further, I am not familiar with your new diagnosis. Will you give me a second to look it up if you aren’t comfortable explaining it to me? I want to be on the same page.
- I can’t believe how hard that choice is. Any idea what you might do?
- I can only imagine how heartbroken you are.
- You can cry with me any time.
- Is it time to send dog videos? (I watch them when I am sad.)
- I would be depressed too. It totally makes sense.
- It’s okay to hurt. This is a huge disappointment.
- Want to hear one of my embarrassing stories?
- You are definitely not alone. Plenty of other people feel the way you do. Including me.
I have an amazing friend Shelley Fritz, who I met through CreakyJoints. She also has rheumatoid arthritis. We were patient governors together and I love her like a sister. We go through periods where we talk a lot and then not so much. It’s a cycle. But I also know that if I don’t reach out to her after a certain amount of time, she will check up on me. She knows I am struggling.
She understands I have issues with my mental health and might need someone to talk to. Or perhaps I did just get a new diagnosis. I also have a best friend, a chosen sister of over 30 years who loves me more deeply than words could ever describe, named Alisa Gipson who does not have a chronic illness. From the beginning, she has asked me open-ended questions like the list of supportive responses above. She also does send me dog videos when I have a bad day, checks up on me regularly, and is usually looking up medicine or a new diagnosis as we are texting about what is happening to me.
These are just examples of what works for me and how friendships are fluid. The supportive responses could be a starting point with a close friend, a partner, or a way for you to set boundaries for yourself to allow yourself time to grieve that the fact that your body is sick and you are tired of fighting today. That way you can get back up tomorrow and keep fighting.
Each of us is different, but each of us needs to be honest about where we are at and stop forcing fake toxic happiness on one another because we are uncomfortable with emotion or do not know what to say. Make a list of what you do and don’t want to hear from others — and go from there.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.