How People Respond to My Fibromyalgia Diagnosis (and How I Wish They'd Respond Instead)


A few months ago, I was diagnosed with fibromyalgia. I have been experiencing symptoms for roughly two and a half years, but no one was able to give me a reason why I was in such despair with my body. I had gotten to a point where I believed everyone had issues with the way their body functioned and what I was experiencing was completely normal for a 21-year-old college student, but boy was I wrong! I felt relieved that I had a name for what I was experiencing. Yet, I was frustrated because this is something I would have to deal with. It’s not like a sinus infection where you can take antibiotics and it will go away.

 

When telling friends, family, classmates and coworkers about my diagnosis, I hesitate ever so slightly because of the reaction I know I will receive. Some reactions are filled with apologies and sorrow for what my life has come to. Which, let’s be honest, aren’t helpful. What. So. Ever.  Some are in disbelief because I seem fine. What they see as fine is my typical day. My body is filled with aches and pains. My head is splitting from the lights in my office or the classrooms at school. There is sweat dripping off my face because I overheat from the walk from the car to my office or the classroom. My day consists of multiple trips to the restroom, multiple swigs of water with meds, and multiple deep breaths, stretches and breaks to make it through the twinges my body experiences… and that’s just the physical symptoms. That does not include the toll this chronic illness takes on my mental health and emotional well-being.

Some believe they are more experienced and way more knowledgeable than the doctor who diagnosed me, who, by the way, spent probably half of their life in medical school to become a rheumatologist. Mind you, a great deal of these people are within that “family and close friends” circle. How lovely. They try to name other illnesses or diseases they think would match my symptoms. They suggest whole foods, going vegan, exercising more, seeing a therapist (because it’s “all in your head” *said with extreme sarcasm*) or even (my favorite) just to lose weight and I’d feel fine.

It takes a large amount of strength and courage to be vulnerable about your body, especially your chronic illness. Sharing about your chronic illness brings fear of whether or not you’ll be judged or accepted. There is a pause before the words “I have fibromyalgia” come out of my mouth where I think, “Will they really believe me?” “Will they treat me with respect and accept that it is what it is?” “Will they be one of those people who doesn’t believe fibromyalgia is a real thing?”

A chronic illness is not something I asked for. I did not ask for a wide range of symptoms, a body that does not function and perform the way I want it to and the outrageous toll it takes on my mental health and emotional well-being. Therefore, when someone tells you they have a chronic illness or any illness for that matter, respond differently. Here are some tips on how to do that.

1. Let them know you might not understand what they’re experiencing, but you’re there for them. Sometimes just knowing someone is there for you makes everything change.

2. Don’t make light of the situation because you’re uncomfortable. Trust me… You’re not the one who is uncomfortable. Be honest with them… Say having a chronic illness must suck or say they must be so frustrated with their bodies because it won’t do what they want and/or need it to do. Don’t say any kind of statements that have “at least” in them. It’s demeaning.

3. Ask them how you can support them. Be willing to help them. If they’re having a flare-up, offer to bring them lunch. Go clean their house for them. Sit with them and watch a terrible movie and laugh through the flare-up.

4. Be understanding when they need to cancel plans. Sometimes shit happens. We don’t have a lot of control over our bodies. If they’re up for it go to their place and bring them their favorite movie and have a night in.

5. Check in with them. Continue to ask them how you can support them. It’s not just a one-time deal. Explain to your friend with a chronic illness that you’d like to support them and you’re going to do that by asking how you can help.

6. Be their friend. Nothing sucks more than having a chronic illness and feeling lonely and depressed during a flare-up. From my experience, it makes the flare-up worse. It hurts worse when you’re going through a flare-up and you’re all alone. It makes it easier to dwell on the shitty things.

7. Be willing to adapt your plans so it’s easier for them to function when they’re going out with you. Park closer to the restaurant or pick a restaurant together so there are more choices that work for your friend if they face dietary restrictions.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Oksana Pushenko.


Find this story helpful? Share it with someone you care about.


Related to Fibromyalgia

lady gaga in 'gaga: five foot two'

What I Took Away From 'Gaga: Five Foot Two' as a Fellow Chronic Pain Warrior

When I wrote about having the same illness as Lady Gaga, there was a lot of buzz online about how someone with as much money and fame as Lady Gaga could be struggling with the widespread chronic pain that comes along with fibromyalgia. The buzz continued to increase as the release of the Netflix documentary “Gaga: Five [...]

How My Illness Has Taught Me to Let Go of People With Clarity and Gratitude

Everyone preaches about letting go, and it wasn’t until recently I had to accept I have to let go of old dreams and relationships. I accepted some goals will remain and they will be achieved differently. I have to learn to live with this diagnosis called fibromyalgia and chronic fatigue syndrome with depression as a [...]
lady gaga in 'gaga: five foot two' trailer

How 'Gaga: Five Foot Two' Is Changing the Game for People With Chronic Illness

It was 12:32 a.m. early Friday morning. I was laying down in my dorm room bed, simultaneously doing hip stretches, completing math homework and hanging onto my stuffed animal. I looked at the clock and thought about going to bed because it was past midnight and I knew I had an 8 a.m. class that [...]
A photo of a woman with a tired and sad expression.

When Your Chronic Pain Leaves You in a Constant State of Tiredness

For those of us with chronic pain, “I’m tired,” is a loaded statement. It means much more than simply, “I want to go to bed.” Tiredness for people with chronic pain is something that never goes away, no matter how hard we try. It means pure, total exhaustion. An overwhelming tiredness constantly. People with chronic [...]