Your Experience Is Real: An Autoimmune Journey
In this post, Liz chats with Scarlett, a Folia user diagnosed with Fibromyalgia, Mixed Connective Tissue Disease, and Rheumatoid Arthritis, who emphasizes the importance of mental health support on the autoimmune journey.
Thanks so much for sharing your story, Scarlett. Would you tell us about your journey?
I’ve always had recurring exhaustion that would come over me, and I traced it back to having mono as a child. I thought my exhaustion was the lingering effects of mono because that’s what it felt like. I went to the rheumatologist within my health system because it had gotten much worse. He said, “Well, I have a lot of white middle aged women who say that.” And he gave me Adderall. I have an anxiety disorder and Adderall was contraindicated for that. It was terrible for my anxiety actually.
I struggled with rheumatologists who knew I had inflammation - they could see it in my bloodwork - but it wasn’t bad enough for any clinical diagnosis or treatment. I was sitting there crying in pain and was being told there was nothing they could do to help me. Thankfully, I have friends who have chronic conditions that I talked to. They told me that it sounded like I had fibromyalgia so they gave me a referral to a rheumatologist they liked who was a good listener. That doctor changed everything for me.
About 2.5 years after I started this process with the original doctor (who gave me Adderall) I received a fibromyalgia diagnosis (2017). Once that was under control we recognized there was other stuff going on. It took another year to add mixed connective tissue disorder (2018) and then another six months for the rheumatoid arthritis diagnosis (2019).
Wow, that sounds like a tough journey and like you experienced some medical gaslighting?
Getting diagnosed was a huge challenge, but it was the key to unlocking treatment and a more functional life for me. They didn’t believe that I hurt as badly as I said. They did a nerve test and told me that I had the nerves of a 20-year old. They saw that as “normal”, but they didn’t look at the whole picture and consider that my nerves were hypersensitive. They wouldn’t diagnose me, and I had to fight for myself. That self-advocacy is super hard when you’re already in pain. I want to be reasonable and I understand I’m within a system, but they wouldn’t listen to how much pain I was in. Just as an example, I hate the pain scale (0-10). When they would tell me to rate my pain, I finally started asking them, “Which scale would you like to use? Yours or mine?” I printed the functional pain scale and took it everywhere and tracked it. I would show it to the doctor and say, “This is the pain scale I’m using.”
Everybody thinks of pain differently. The doctors don’t know what I mean by a 4/10. If I tell you I’m at a 4 and I’ve taken every pain med I already have, please understand it’s different from the way you clinically consider a 4/10. Neuro pain is different from joint pain. We tolerate different kinds of pain at different levels.
All this to say that because I wasn’t believed about my pain levels, I had to learn different ways to communicate my pain that would connect with physicians and help them better understand.
How did you cope during that time?
I fought with depression because I hurt and couldn’t do anything, not to mention being disbelieved. The goal of any treatment was always productivity. There was never a consideration for me being a happy human during treatment conversations. And there’s a concept in our culture that “if you're not productive, you’re not valuable.” I experienced grief about who I thought I was, and what I thought I could do. I kept being in denial and trying to do everything, household maintenance, work, raising my kid. None of that worked right and I felt like I was failing.
In my autoimmune research I discovered that one of the things that can help people with chronic conditions is mental health therapy as a conjunctive treatment. You can have a longer period of successful medical treatment with mental or emotional health support around all of this. Medications for the physical body can take you so far, but there is also a huge need for mental health support for the chronic fatigue, anxiety, and stress that always has your nervous system activated. You can’t undo all those things completely, but you can learn to mitigate them.
It sounds like having a therapist has been extremely important to managing your physical health?
I would jump up and down with a sign if I could to tell people how important mental health support is. Having a therapist allows me to downregulate my nervous system. It allows me to be aware of when I’m struggling and to have tools to say, “OK, how do I slow down, how do I make myself feel comfortable and not get upset”. If I get upset, my fibromyalgia goes out of control and then I’m in worse condition. Being able to head it off at the pass means I don’t have to let the fibro run my life. It gives me another avenue that directly impacts my conditions.
The incidence of trauma with fibro is really high. Even if you don’t have any of that going on, living with a long-term condition is a big life change that brings a lot of grief along with it. The other important effect of mental health therapy is that you receive acknowledgement and validation when the medical community may not validate what you’re experiencing. That support gives you the courage to keep pushing back to reach whatever it is you want to do. To go to work or take care of your kids or go to a wedding. Whatever it is, you know that somebody has your back and you can stand up for yourself and learn those self-advocacy skills.
As an example, I’ve worked out through therapy this idea of being “unproductive”. When my hands are in a flare and I have too much pain to do “productive” things, I’ve put together a cheatsheet of go-to activities that let my mind continue being active. I enjoy learning and will watch Youtube videos or do classroom activities to give me a sense of accomplishment. When the pain is too much for even that, I have a cart of soothing items that goes with me wherever I am in the house. It has my heating pad, a familiar book, ointment that eases my joints, a list of people who are willing to talk when I’m struggling, and a list of foods that are appealing. I put all the tools in one place so that if I’m experiencing a lot of pain, I don’t have to go looking for everything.
What’s your favorite book to read when you’re in a flare?
I love Lord of the Rings. The language is so beautiful that I can get lost in it. I know the plot by heart because I’ve read it so many times. I don’t have to worry about following the story closely when I’m experiencing brain fog.
Would you share how Folia fits into your autoimmune journey?
I adore Folia. I can go to the doctor, literally with a printed out chart of my symptoms, and show them what my pain looks like month by month. I’m able to say to my doctor, I used to have a functional pain level of 5/10 every day. Since starting this new medication, the pain keeps reducing and it’s now down to a level of 2 every day. This medication is working, and I want to stay where we are. Folia allowed me to show them hard facts instead of a vague, “I think it’s working.” That made a huge difference to my doctors.
The doctors laugh now because of my reports and charts. I became the patient who comes in to doctors’ appointments with facts. They quit doubting me because they knew I was aware of my body and what was going on. I couldn’t do that without Folia tracking the pieces that I needed.
It’s also helpful because sometimes I’m gaslighting myself. Did I imagine the pain was that bad? I’ll talk myself out of it if I’m trying to remember what the pain was like last week or last month. Folia doesn’t let me talk myself out of it. I can look at my notes and see over the last month that I’m actually in a flare and I didn’t realize it.
Folia was also important in my journey early on because I would forget to take my medication. Or I would take one medication but not the second. Folia allowed me to see which one I had taken, and it gave me a gentle reminder to take all my meds. My medication routine got way more consistent and that helped my overall health. Just being able to have that little bit of check-in.
That’s amazing to hear! What advice would you give to someone who is still trying to find a diagnosis?
Be specific when talking to your doctors. Tell them the functional problems you’re having in your everyday life. Bring notes so you can point to objective data during your appointments. That’s where Folia saved me. Rather than giving a vague idea of how I’d been doing, I could point to specific dates and say, “I couldn’t hold a glass of water” 15/30 days last month or “I couldn't get out of bed 6/7 days a week because of the pain and fatigue”. You need to translate your experience into something they can understand because you’re living it and they’re not.
Don’t give up. Just because you don’t get the diagnosis right away doesn’t mean your experience isn’t real. Keep seeking answers and find a doctor who will listen to you and take you seriously. Don’t leave your appointments without your list of questions being answered. Bring a physical list to your appointment so you don’t forget anything.
Find a community of people who are also dealing with chronic conditions. It’s so important to be able to share information and learn from each other.
Involve the people who care about you. I wish I had brought a family member to appointments earlier on to help advocate for me.
Insist on doctors you feel comfortable with. For me, I should have insisted on having female physicians sooner than I did.