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Expert Answer: When friends & family don’t understand migraine
September 29th, 2011 - Posted by EllenQuestion: 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
Related articles & posts
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Discuss
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"I had my first migraine when I was 12. I thought I was going blind, the spots in my vision all grouped together and everything went black. The pain was intense and felt like my head would crack open above my right eye." 
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Now that my headaches have reached such an intractable level, my family has had to suffer more with me. I used to shelter them as much as possible from the pain and now it is so excruciating my 2 young daughters have often found me weeping on my kitchen floor, praying for something, anything that would help. I feel guilty that they have to live this life when I’m the one who is sick. My husband is very supportive but it hurts him to see me this way, he deserves a partner not a disabled mess. I understand when his frustrations reach the boiling point, I reach that same point every day. I find it difficult to schedule anything in my life that cannot be answered last minute yes or no and wishing that when I can’t make something I didn’t feel like an outcast at the next event. I was 15 when my headaches started. 21 years later they are beyond anything I can described. The pain and nausea run my days and I find it harder and harder not to resent be afflicted with this disease.
KellyH.
Thank you for this wonderful story, my migraines have made me so misunderstood. I recently had a teacher tell me that he thought I was a jerk because I wear sunglasses indoors. All I can say is continue to try & educate people about this disease. I have the problem of pride, not wanting tell everyone about my constant headaches, but once I began sharing my condition I had more people replying with remedies I could try
I’ve often wondered if it would be easier to have a more serious, but well known disease like cancer. Thanks you for putting this in writing for me. It’s so hard when your family and friends are sick of you leaning on them all the time, when the insurance companies deny your claims because chronic migraine “doesn’t affect your ability to work”, when you end up in the ER in your vacation, when you just can’t figure out how to be in pain for yet another day.
Thank you for this article. If only more of this sort of thing could appear in the general press and more people DID understand. the stigma and lack of understanding, the compromised relationships and friendships i’ve lost are only second to the daily pain.
I am forever grateful that I have a husband who understands, he gets migraines, but no where near the extent that I do. What a relief for me to have the compassion and concern that I finally needed. He understands when things are not done, when he comes home and I am in bed (he knows why without having to ask). Now that I am getting medical treatment from a specialist, my life seems more normal. But a comment from a sister left me hurt and defensive when I was visiting my dying mother in August. A situation arose and I had the solution for it. My sister looked at me, because it was tied to my migraines, and said that she never thought she would be more grateful I was a hypochondriac. Forget I am seeing a neurologist and have a diagnosis, they still just do not get it.