In May of 2012 a cyst on my right ovary ruptured, which was the beginning of my chronic pain. It was the last piece of the puzzle, and I was diagnosed with fibromyalgia in February 2013. Migraines started before that, but they have worsened since. Before these changes, I was an active and healthy person, with a few notable exceptions of having mono in 2007 and Legionnaire’s disease in 2010 (this was really a result of my depleted immune system from my mono being so bad). I went from going to the gym 3 to 4 times a week and having an active social life to having trouble with simple things. I remember when I had to quit going to the gym. That was hard. I got married in May of 2013, and I cut my long hair after the wedding because it was hurting my hands to style it.
A diagnosis is only the beginning
The only official diagnoses I have are fibromyalgia and tachycardia. I don’t have a formal diagnosis for migraine. I believe a diagnosis is a starting point, not an end. Traditional medicine would have you believe your diagnosis is your fate, but I have found it helpful to stay curious and find ways to take care of my body and mind. Fibromyalgia is such an enigma, there isn’t really a standard course of treatment anyway. It has taken a lot of trial and error over the past 8 years to find stability, and I don’t think that quest will ever end, honestly.
It helps to have people who understand
Overall I have to say that I’ve been blessed not to lose friends over the complete change in my ability. In a way it was helpful that I was diagnosed around the time I got married, because it’s a natural point of change anyway. I do find it hard to make new friends, however. I think that’s hard over the age of 30 anyway, and when your energy and body are unreliable, it compounds the challenge.
I have several family members living with fibromyalgia. It does help to have people who understand, though because our circumstances, symptoms, and bodies are so different, it’s not without conflict at times. My mom was actually diagnosed just a few years ago, so well after me. I was so sad to see her start to really understand what I have been going through. She has chosen to be medicated while I have not, and that’s okay. The biggest support I have is within my own home.
My husband is just incredible. I know it’s not always easy, and he has definitely struggled with my illness, but he takes amazing care of me. It can’t be easy to live with a person whose energy is so unpredictable, but he is always there to listen and help. I truly have no idea how I could have gotten through the last 8 years without him. We also have two dogs, and they have been so important in maintaining my emotional health especially through the pandemic. My husband leaves for work M-F, so without the dogs, I would have been completely alone during the pandemic. They keep me company and are very snuggly. Plus, they get me out of bed. I know I have to get up to take care of them, and sometimes that’s literally the only reason I leave my bedroom in the morning.
Chronic illness can be expensive
The doctor who diagnosed me had been my primary physician since I was 5. He was very clear with me that allopathic medicine had little to offer me outside of drugs with scary side effects. That was actually a favor — it encouraged me to seek out alternative treatments. Because of this I have been able to maintain my career, though not without going on leave a few times for rough patches. COVID did me a favor in letting me work from home so I can manage myself much more easily.
One of the things that doesn’t get talked about enough is the expense of being chronically ill. I added up the amount of money we spend each month just keeping me up and running with supplements, clean diet, health insurance, acupuncture, chiropractic care, flotation therapy, mental health counseling… It’s a lot of money.
We make sacrifices to maintain my health. I make a good living, but we drive an old beat up car and don’t go on vacation, mostly because of all the money we spend keeping me well enough to work and have a somewhat normal life. There simply isn’t enough research to support insurance coverage for so many things chronically ill people need. And I’m lucky — my insurance does cover chiropractic care and acupuncture. But my plan is VERY expensive.
Fatigue is my worst symptom
I’m lucky… and I’ve worked really hard to manage my pain and keep it at a stable level — not that I don’t have flare ups. The fatigue after a migraine is for sure the worst, also because it comes along with a flare up of other fibromyalgia symptoms. I do struggle with anxiety, though I would say it is more generalized than severe.
Through therapy, I have developed a lot of coping mechanisms for managing anxiety. It helps to be able to recognize it. My anxiety was really bad in the first year of two of my illness because it was just so hard to distinguish new/scary symptoms from just fibromyalgia stuff that would self-resolve. So I would get really freaked out about what was happening to my body and whether I would be okay.
Now I am much more familiar with what my body is doing. But anxiety is so common with chronic illness because there’s so much fear of judgment, being different, not being able, and people not understanding. Things that are easy for able people are harder, but with an invisible illness, that can be really hard to navigate.
I had never really struggled with depression until the pandemic. I am an empath, and between the isolation and all the suffering in the world, I went through a tough time. That’s when I decided to go back to therapy. I love, love, love being in therapy. I currently go twice a month, but I would go every week if I could afford it. It has helped me so much to not feel so alone with my gigantic feelings in this big, scary world.
The darkest stage of my illness was pre-diagnosis
My body was in chaotic crisis and I had no idea what was happening. I knew I had occasional migraines, but I had never even heard of fibromyalgia before I was diagnosed. It was overwhelming, and I was in so much pain I was sleeping on the couch because my mattress was hurting me. I’ve definitely had a few rough periods over the years where I had mystery symptoms that would resolve and I ended up having to take time off work. The times when symptoms are out of control and nothing works are the hardest.
There was a particular week or so about 4 years ago where I was on leave from work due to some bad digestive issues that no one could diagnose. I was sleeping sitting up in a recliner because otherwise my acid reflux was so painful I didn’t sleep at all. My husband was in school and working, taking care of me, and so stressed. He got sick with a stomach bug, and it was a really bad time — neither of us could really care for ourselves or each other. Fortunately, we made it through, and nothing like that has happened in a long time.
There’s joy in the little things
I actually have a whole list of things that bring me joy: my husband, my dogs, spending time with family (especially my mom), being creative, flowers, cooking, baking, watching a favorite show or movie, doing something nice for someone else, singing in the shower, taking a bath… a lot of simple but important things.
A regular day looks like getting out of bed to let the dogs out, getting their and my breakfast, and either sitting down for work or, on the weekend, relaxing on the couch or attending church (virtually in pandemic times) on Sunday. I always eat at least 4 times a day: breakfast, lunch, afternoon snack, and dinner. It helps maintain a consistent energy level more than anything else I have tried. In the evenings I make dinner and either spend time helping with church activities or just relaxing. I love a good, long bubble bath when it’s not too hot here, which is only about half the year.
Life without my illness would look like…
Me being a mom, not struggling to do basic things, and a lot more adventure. I miss traveling and being active. I really loved working out! I’m honestly not sure I would have ended up with my husband if I hadn’t gotten sick. I was always so busy, and being ill caused me to slow down and appreciate another person in my life in a way I might not have otherwise.
This is what I’d like others like me to know
- You can feel better than you do right now. I think for the vast majority of chronic illness sufferers, this is true.
- If you are in a rough patch, know that it won’t last forever. It will end eventually and you will be more stable (if you are managing your illness okay).
- It is not your fault you are sick. You CAN do things to feel better, but it’s not your fault this is happening to you.
- Your illness can teach you things you may not have learned any other way. While I would be thrilled if my illness were suddenly cured, I’m not sure I wish it had never happened. I have become a more compassionate, inclusive, caring person because of my illness. I have learned to slow down and prioritize my energy for things that really matter.
I'm Shelly Ramsussen, 38, from Phoenix, Arizona. I would not be who I am today without what I have been through, and I love who I have become. Let's connect on IG @shellynotmichelle