I’m Using Writing to Cope With the Emotional Rollercoaster of a Chronic Illness Diagnosis
In my last article “This Is How It Feels to Be Young and Have a Chronic Illness,” I discussed the pitfalls of having a disease that never goes away.
For the past couple of years, I have been suffering from random excruciating pains in my body, debilitating fatigue, and a myriad of other symptoms unrelated to the Osteoarthritis I have had for five years.
I finally advocated for myself with the help of my therapist and was tested for every possible aliment before being referred to a rheumatologist.
I mentioned in that article that I had my appointment with the specialist the following day.
At that appointment, my new doctor diagnosed me with Fibromyalgia.
The past couple of days, I’ve worked on home renovations and ignored my feelings.
Now It’s time to deal with my resentment and sadness the only way I know how to: Writing.
Welcome to my journey, thank you for being here.
What Is Fibromyalgia?
Fibromyalgia is a syndrome characterized by debilitating, widespread musculoskeletal pain, and 200 other symptoms that affect many different areas in the body.
For years, some doctors believed that Fibromyalgia was “all in our heads” and they are not incorrect, in a way.
Hear me out.
Fibromyalgia pain seems to be related to how our brains interpret pain. I watched a video from “Arthritis Ireland” with a dissertation from a pain doctor named Andrea Nichol who specializes in Fibromyalgia.
In the video, she explained how fibromyalgia patients are different from other people without Fibromyalgia.
“We have learned from good research that patients with fibromyalgia have lowered pain thresholds”
The pain is very real and this is a legitimate condition.
She went on to explain that if you hook a patient with “fibro” up to an MRI machine and pressed hard on their body, their brain “lights up” on the imaging in more places than someone with a “normal” brain.
Fibromyalgia also causes many other symptoms: Sensory overload, skin issues, bowel problems, urinary difficulties.
Researching Fibromyalgia is helping me understand my body more. If you suffer from any condition, I highly recommend finding out as much as you can about it.
Learning everything you can about your body is empowering when you have a chronic illness.
Diagnosis: A Definitive Answer
I have been through the diagnosis of a chronic illness before when I was told I had Osteoarthritis in my neck and back five years ago.
However, this diagnosis has hit me harder.
My expectations were the problem.
I was expecting to be told that I would need to have surgery on my neck. This wouldn’t be a barrel of laughs, but it would fix me. I assumed all my issues could be fixed through the miracles of modern medicine.
Another part of me assumed that he would send me away more confused than before with no explanation for my pain.
Obviously, assuming made an ass of me but not in a bad way.
Before my appointment, I pictured myself walking away from the appointment and crying because I had no answers for what was wrong with me.
Instead, I walked away from my appointment sobbing, feeling fragile, and lost. I felt like this new person who was made of thin glass.
I am a new person. I am a new person who now knows what is wrong with my body and that is a much better outcome than what I expected. This is more than some people get.
But why do I feel so sad? It could always be worse.
I Have to Change My Way of Working
On the day of my diagnosis and after my early morning appointment, I painted our living room walls for nine hours. I didn’t stop, even to eat.
I don’t like to take breaks, I like to push myself to get through a task and then reward myself with relaxing afterward.
I love the feeling of chilling out after a hard day of work without breaks.
I have learned this is not a realistic way of living for me anymore.
I couldn’t hold my head up towards the end of the day. I have been limping from the pain in my legs for two days.
I have to relearn how to work in a way that doesn’t make sense to me.
I have always felt that taking breaks postpone the inevitable. The job has to be done and what is the best way to get it done?
Working without stopping.
However, if I write without stopping or do housework without breaks, I will end up being in pain for at least a day.
So it’s up to me to change my way of working to ensure a better tomorrow.
I Am No Longer the “Life of the Party”
Since my early twenties, I have been known for throwing a good “rager” and being able to stay up all night drinking fancy drinks with my friends.
I've seen this change coming for a while. I have slowed down alot since having my daughter.
However, once a month, like clockwork, I always have drinks and recapture the magic of my party days.
There is no house party, shots, or clubbing: It’s just me, my couch, my husband, sometimes a friend, and always some good tunes.
A perfect combination.
Lately, my once-a-month “party time” has resulted in my skin hurting for days after.
It hurts so much that my daughter brushing up against my thigh causes me to wince in pain.
I’m assuming the alcohol is causing inflammation in my body.
So do I stop drinking altogether or have my once-a-month “couch drinks” and live with the consequences afterward?
I don’t think I’m an alcoholic but the thought of giving up that one night a month makes me feel very sad.
I’ll be letting go of the last shred of my youth and my outlet for the stress of being a mom all at once.
All of my friends and my husband are drinkers (we are from Atlantic Canada, there’s not much to do here).
Alcohol is a big part of our cultural identity. It just seems weird to no longer partake.
I know, I know. I should be focusing on what I can still do, rather than what I can’t do anymore.
However, this is new to me and I need to re-evaluate my entire life.
Notice how I’m working through my emotions right now? This is the therapeutic magic of writing in the flesh, people.
A New Lifestyle
Exercise is very good for my illness. It hurts to exercise but it makes it better somehow. This is a real “I’m damned if I do and I’m damned if I don’t” situation.
I have been practicing yoga for 15 years on-and-off but the poses became too difficult for me, so I stopped practicing without trying anything else.
My doctor recommended Tai Chi. I am excited to try something new but I am so lazyyyyy.
I know, I’m whining.
I just have to do it.
Then there is food. Yes, it turns out that the stuff we eat has a big impact on inflammation and pain.
So I have to do an elimination diet.
If I’m being real with you, 95 percent of the things I eat are bad for me.
So this is another lifestyle change and another thing I’ll be giving up.
I realize I have a lot of vices: Fatty foods, ginger ale, vaping, my once a month drinks, and lazing on the couch mindlessly eating flavored popcorn while I watch “The OC”.
At least I’m not smoking crack, I guess.
I’m going to work on this by starting Tai Chi this week, baby steps can take us a long distance.
Wish me luck!
I Have to Be Selfish Right Now
I am an empath and the “Dear Abby” of all of my friends. I am always the one who gives a lot to people and doesn’t get much in return.
I have some amazing give-and-take friendships but I have many more instances of people appearing in my life for help and then leaving once they get what they need from me.
I have never minded this dynamic until this weekend. After all, that’s the life of an empathetic person. We are lightworkers and I think that’s our purpose.
This past week I’ve been bombarded with messages from family and friends wondering how my appointment with the specialist went.
I didn’t have the energy to answer all of the messages so I decided to post an announcement of my diagnosis on Facebook.
Immediately after, four different people messaged me, asking about their aches and pains and which doctor I saw to get a diagnosis of Fibromyalgia.
Do people really think it was that easy for me?
My symptoms were not just aches and pains, it was much more than that.
Fibromyalgia has impacted my entire body for years. I have been suffering.
The empath inside me felt for these people and then the other part of me was angry.
The empath side won and I spent two hours giving these people advice and sending them resources and print outs for them to fill out and take to their doctors.
I thought “Giving two hours of my life isn’t a big deal if I can help these people”.
After all of the time I spent consoling them and offering resources, 3 out of the 4 people told me “It is pointless to show my doctor these handouts, he/she won’t listen anyway”.
The way I see it, if your condition is debilitating enough, you will advocate for yourself. Otherwise, you just want to whine.
The rational side of me wanted to slap the emotional side of me.
I have decided to look after myself while I process this information. I’m also done helping people who won’t help themselves.
This is a big lifestyle change but one I’m very okay with.
I’m not being selfish, right?
My Daughter, My Life
I struggled to bring my daughter into this world, if I had given birth in the “call the midwife” days, I would’ve died. This is why I see a therapist.
Like most parents, my child is my life. Even though she’s only a toddler, she’s stubborn, brilliant, and effervescent. She was worth the pain.
When I watched Dr.Nichol’s video, I learned something that shook me to my core.
The children of parents who have fibromyalgia are eight times more likely to get Fibromyalgia through genetics.
I know, I know. If I think about everything that could happen later in life, I will drive myself crazy.
However, I can’t stop thinking about Willow living in pain. I struggled so much to bring her into this world, I can’t fathom her living like I have been.
My mother told me last night that ever since I was a little girl I’ve complained of pain.
All I can do is hope that Willow takes after her healthy, strong father.
On the “flip side”, if she ends up with Fibromyalgia, I can offer her the support and love that my mother, who also has chronic illness, gives me.
No matter what happens, her and I are always “in it together”.
Accepting My “New Normal”
I obviously have some work to do. I have to leave many things in my life behind. Some of these things I’m ready to let go and others will be more difficult.
I’m grateful, but I feel defeated.
I’m relieved to have answers, but I’m scared of the progression of my illness.
I realize I do not have Cancer or another terrible disease and I know this won’t kill me, but I am still processing my diagnosis.
It feels more detrimental than it is.
I don't want sympathy from anyone and that isn’t the purpose of this article.
Writing has always helped me put my thoughts in order and name my feelings.
Thank you for sticking it out with me, this was very helpful.
By reading my story, you are a part of my journey.
“Write about the emotions you fear the most.” — Laurie Halse Anderson
Amy Cottreau is a freelance writer who hails from a small city in Atlantic Canada. She enjoys interacting with fellow writers, dreaming of ideas for her next article, and researching a myriad of topics