Question: How do you handle family and friends that don’t understand Migraine Disease?
Migraineurs miss appointments. We miss family gatherings. We request special food, special lighting, special medications, special changes to the lives of those around us so we can function.
We spend large amounts of time in doctor visits. We wear sunglasses indoors, we visibly gag at perfume. If we are chronic, we begin to look obsessed at the control of our environment so that we can control our Migraine Disease. In effort to control our disease, we are separated from our normal lives — our jobs, our ability to function, even from the people we love the most.
From the outside, we often look sad, weak, anxious, controlling, depressed, angry, self-serving or even selfish. Our needs are so vast and our ability to deviate from them so small.
This is a question that was asked in our forum this last week. I began to write the forum member my answer, and decided that it should be a blog post. This is an important discussion to begin because Migraine is a progressive disease, and I have some very personal feelings about the answers I’m about to give my readers…
The Migraineur’s perspective
It is a sad statement to make, but I would venture to guess that there are precious few chronic Migraineurs that haven’t felt the pain of a family member or friend who cannot manage — or chooses not to try to – understand what we are living through each day.
A Migraineur I worked with on Headache on the Hill 2011 in Washington DC put it this way. She said,
“I am a breast cancer survivor. Compared to my experience with chronic Migraine, breast cancer was a breeze. All the information is out there. Everyone understands cancer and its treatment and has compassion for the patient. The stigma of it is gone. The therapy ends eventually — there is a light at the end of the tunnel. The pain of the disease is treated vigorously. Migraine is nothing like breast cancer. The pain is so much worse and usually undertreated, nobody understands the disease or the patients, the stigma is overwhelming and there is no light at the end of the tunnel because our disease doesn’t go away.”
Her point was not that breast cancer is a breeze — quite the opposite! We all know how devastatingly hard it can be. Her point was to illustrate the grave difficulty in living with chronic Migraine compared to something as serious as cancer — a condition most people can understand. The legislators we spoke with that day were outwardly shocked at her statement, and it opened doors for the other patients there to speak and to be heard with different ears.
Our disease is invisible. It can’t be seen on a lab sheet or an x-ray film. With each test performed, our families hear the words “everything is normal”, yet we act as if we are suffering and are unable to perform even normal daily functions. Misunderstanding eventually leads to mistrust. Unfortunately mistrust is fed by some Migraine illiterate health care teams who have sworn to help us yet often doubt us, refuse to believe us, or sadly, even dismiss us. Our families see the dichotomy of a health care team’s statements that we are “normal” and our outward actions, and they are confused. Who should they believe? The word “normal” that all the trusted and learned doctors and nurses toss about so easily and often with smiling faces, or the unhappy, depressed patient who insists there is still something wrong and they are in pain?
Where does this leave us – the patients?
Keeping this in mind, it’s no small wonder that many marriages crumble when a Migraineur becomes chronic. Friends and family members slowly disappear. The patient becomes depressed at the downward spiral and loss of control of their lives as a result of something that nobody can even see.
In the next few posts we’ll explore:
- The thoughts and experiences of loved ones toward our Migraine Disease
- Those in our lives who want to understand Migraine Disease and helpful tips
- Those in our lives who do not want to understand Migraine Disease and helpful tips
Need help explaining migraine to others? Check out “10 Things I Want To Share About Migraines” – an article that can be emailed, posted to Facebook, and printed