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As if finding a doctor to treat something like vestibular migraine isn’t difficult enough, you have to navigate your life with this new chronic illness. While some have symptoms from an early age, many don’t, and they can morph and change over time. This illness can randomly pop up or be triggered by stressful events, hormones, and other things that are out of one’s control. While they say Migraine is genetic, there’s nothing that can explain why some people have it chronically and other’s don’t. Therefore there’s no possible way you can prepare yourself for how to handle the situation of a chronic illness. You’re sort of thrust into the deep end and expected to swim with limited resources.
While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
The dark side
Chronic illness affects your family and friends drastically. You’re no longer the same person your spouse married. You cannot travel the way you used to or go out to eat the same way, you have new constraints. Rituals rule your life as you request to sit on certain spots of the plane or in the car, and run through your checklist. You have to request to move to a quieter area in the restaurant or a spot where bright lights aren’t shining on you. And if it comes on quickly, as mine did, your spouse doesn’t fully understand what’s going on. All they have known is the “normal” you that can do anything, and now you can’t drive, work, or make it outside the house. Your relationship grows strained because neither of you know what’s wrong. How does one make a marriage work when you become a totally different person?
You lose friendships quickly because you can’t make those plans that were once so easily scheduled. Some friends grow tired of hearing that you feel terrible, day after day. They quit asking “how are you feeling?” because they know it will always be the same answer. Others don’t understand why plans have to be canceled for something so simple as “it’s raining”, not realizing that barometric pressure changes can be a huge trigger. You have to make your own food or eat before you go when you are invited to parties. When your friend is kind enough to cater to your migraine diet restrictions, there’s always something that slips through, and you either end up risking a migraine attack or feeling super guilty for saying you still can’t eat it.
There’s no easy way to handle it. On one end of the spectrum, everyone caters to you and you feel guilty for having them go out of their way to please you. On the other end, they get frustrated and make comments that are hurtful or make you feel like a huge burden.
The shift comes when you change your perspective.
Perhaps you notice the strain on your partner and plan some time to sit down and work through it. You use open communication to express your thoughts and feelings. This in turn can lead to an open and more supportive relationship. You may even find you have a deeper appreciation for each other as you work through something so difficult.
It’s ok to mourn the loss of old friends, but also understand that you need to surround yourself with people who lift you up. Let go of ones who no longer do that. Although all of your friends might not understand exactly what you’re going through, some will try. Appreciate their efforts, even if they don’t always say the right thing. There will also be new friends made, perhaps through support groups online. Some of my closest friends now are ones I have yet to meet in person. We cheer each other on through the ups and downs of our chronic (and now episodic) illness. When we text and commiserate about the (literal) storms moving through, we know exactly what that other person is feeling.
As you navigate through this journey, there are high highs and low lows. Nothing is greater than having a pain free day. You may celebrate too much only to be knocked down the next day and have to build back up again. Resilience is sadly not something we’re born with, but something we have to learn.
On those low days, I find that there are only a few options – a good cry, an act of self care, or a moment of writing down thoughts and feelings in a journal. At my worst, I wrote down just 2-3 sentences in a journal each day. Looking back on it now, it’s tough to read. The feelings of being worthless and not knowing if this pain would ever end seemed to overwhelm me. Now that I have more freedom from this illness, I can look back on it with a new perspective. Small goals got me through. Whether it was walking down the street, cooking a meal, or even going out to dinner, I celebrated these small achievements that I took for granted before my illness.
Now I never take a vacation for granted – that’s a flight I took where I didn’t get horrible symptoms. I never take a meal for granted – I can actually cook without having to sit down to chop things or hold on to the counter to steady myself. I can make it through a grocery trip without having to crawl back in bed. And I appreciate the friends and family who stood by me through this season so much more.
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