How To Make Sure You Don’t Downplay Your Condition

January 26, 2024
May 18, 2022
How To Make Sure You Don’t Downplay Your Condition

If you live with chronic headaches or migraine, you might dread the question, “How do you feel?”

Sometimes, we simply don’t have the proper language to accurately describe our symptoms. Other times, it can get incredibly tiresome to describe unrelenting pain. In many circumstances, we might be afraid of the stigma that exists around invisible illness – of being blamed, disbelieved, or dismissed.

For many reasons, sharing our pain can be challenging. But working to be more transparent about our conditions allows other people – doctors, loved ones and colleagues – to effectively understand, support, and care for us.

Here are some suggestions for ways to work through challenges by talking about your headache condition and making sure that you don’t downplay your pain.

When Talking To Doctors

Sharing your pain isn’t complaining or being a “difficult” patient; it’s a step toward providing the critical information a provider needs to develop a treatment plan. If you’re still highly debilitated by your migraine headaches, doctors want to know. For example, this means telling your provider all of the days you have head pain, not just migraine attacks.

It helps to have data to back up your lived experience and make sure you don’t miss any important details or minimize your symptoms. Tracking your headaches can make sure that you provide the information needed for accurate treatment, including symptoms and pain days.

Like many chronic pain patients, I’ve had physicians err on the side of disbelief about my invisible illness. When I felt blamed or shamed for my illness, I became less willing to be forthcoming about my health overall. That’s why it’s so important to work with medical providers you trust who feel like true partners – those that make you feel seen, heard, and supported.

When You’re With Loved Ones

Migraine has a real impact on relationships: about two-thirds of people with chronic migraine feel guilty that their migraine makes their partner’s life harder. The important thing to remember is that being proactive and direct leads to stronger relationships: the people who care about you want to support you.

Using a shorthand to describe pain or symptoms can go a long way in bridging communication gaps and helping others quickly understand what you need. In the early days of my diagnosis, I used a pain scale ranging from one through 10 with my family. If I was at four, they knew I could operate more independently and tolerate some activity and conversation. If I was at seven, they switched into care-taking mode while I focused on coping.

Not hiding your symptoms actually enables the people in your circle to know how best to help. I do what I can on my own to avoid triggers and prevent symptoms, but managing my migraine effectively often means reaching out for support. You don’t have to share all of your health details in order for people to still help you; it can be as simple as requesting that someone dim the lights or leave out a certain kind of food at dinner.

It’s taken me years to accept that having “extra” needs doesn't make me burdensome or high maintenance. Now, I view asking for support as another tool in my migraine toolkit.

When You’re At Work

It’s up to you whether to disclose personal medical information to an employer, but when it comes to migraine, it can be really helpful to be proactive and schedule a meeting with HR or your boss. Then, you can walk through the condition and symptoms, and note that you might be out of commission for a day or two should you get a migraine attack.

Although I was afraid of the stigma against migraine, I had a proactive conversation with HR about my migraine condition at my last full-time job because I wanted to make sure that no one was surprised if I suddenly had to leave work. Being proactive meant that when I felt an attack coming on, I could focus on taking care of myself instead of scrambling to explain.

You also have the right to reasonable accommodations in the workplace to be as productive as possible. In addition to asking for flexible time or remote work accommodations, you could ask for light adjustments, noise reduction, an ergonomic workspace, and regular breaks.

Speaking up about your needs can be scary, and takes practice–but it’s worth it. Communicating clearly and advocating for yourself can lead to stronger relationships and improved care for your chronic headache or migraine.

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Carolyn Rivkees, Migraine Patient
Carolyn Rivkees is a writer, consultant and patient advocate, who runs the popular Instagram community @chronically_cheerful.
About the Author
Carolyn Rivkees is a writer, consultant and patient advocate. She has lived with migraine for over a decade, and her episodic migraine attacks became a chronic, near-daily occurrence about five years ago. After leaving a career in communications due to her health, Carolyn began sharing her firsthand experiences to help others navigate wellness challenges. She runs an Instagram community, @chronically_cheerful, to inform and inspire those living with migraine and other chronic illnesses, and also partners with brands working to help people feel better.

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