Surviving Migraine Alone

Migraine separates us from others. Some patients are lucky enough that they only feel this separation during an attack when we seek out a cool dark room where we can fall asleep. Others suffer attacks so frequently that either our disability has separated us from others, or those we care about have separated themselves from us out of frustration or exhaustion, leaving us alone.

One of the worst possible things we can do is to let Migraine or any other chronic illness isolate us. In almost every instance, isolation is the enemy because it leads to so many other negative things in our lives that work against us. Isolation helps to create an explosive or implosive situation.  Both are destructive, and both can be treated and avoided.

What is an explosive situation?

Think of what it feels like to feel anger, or frustration… many of us feel that there is pressure inside our bodies and that we’re ready to explode. It builds and builds, and we might explode by saying things we normally wouldn’t say, or by doing things we normally wouldn’t dream of doing. These things are usually generated by that anger or frustration. We become pressure cookers and the buildup of pressure becomes so great, it simply has to go somewhere.

What is an implosive situation?

Think of what it feels like when you’ve become depressed or sad about something. You might feel like a great weight is on your shoulders, or that your body is being slowly squeezed to the point that you can’t even breathe right anymore. Some of us feel like we’ve shrunk, or that we want to shrink up, fall into a hole and disappear.  Similar to an explosive situation, an implosive situation can make us say or do things we normally wouldn’t dream of saying or doing in a normal situation. The pressure is on, but instead of being the pressure cooker, we are inside the pressure cooker and can’t get out.

As dangerous and uncontrolled as an explosive situation can be, an implosive situation can be even worse. As a patient advocate, I am most concerned about an implosive situation that might be made worse due to negativity or isolation, because these are the patients most likely to give up, lose hope and the will to go on living, and trying to get better.

What kind of reaction are you most likely to have?

Even if you are not isolated by your Migraines in a way that has damaged your personal relationships, most of us still can identify with being one or even both types of patients. Those who feel they fit into both categories frequently, will usually still find that they are predominantly more of one than the other.

Good things can come from these reactions, when they are well thought-out and not gut reactions.

Which type are you?

I tend to have gut reactions. However, I’d love to challenge you to consider what I do when I stop to think about them. I turn them into something useful. For example:

When I got angry at my pain management doctor for dumping me with a two sentence phone call that lasted less than 30 seconds, I first felt an implosive reaction. I wanted to give up and just dig a hole and disappear. I felt broken. I wanted to give up my advocacy work, leave the family I was burdening, and isolate myself further, somewhere nobody could ever find me.  Of course this is not realistic, but it’s also not healthy thinking. My isolation made me feel even worse. Isolation tends to make me feel that I no longer matter.

When I thought about it more, I started to get angry. Isolation made me allow that to blow up even bigger than usual for me. How dare any office treat a patient like that! This wasn’t good and very out of character for me, so I made a choice. After I got over being ticked off, I realized that I had a job to do here. I didn’t want anyone else to experience this, so that meant I really needed to do the dirty-deed: confront the office and have a discussion with them. Either I would fix the misunderstanding and end up a patient again (I really do like the doctor and the office) or I would make sure management knew what happened and hopefully the situation would never happen to anyone else again. At least losing this good doctor and having to start all over again, wouldn’t have been for nothing.

Isolation made me feel that I didn’t matter, and I proved it wrong.

Denying these feelings is to deny an important part of ourselves. These are genuine feelings. We are entitled to them and we do nobody any favors by taking these feelings, putting them in a box and burying them in the backyard. We just need to be extra careful about them when we feel them with a sense of isolation at the same time.

Here are some tips that are helpful to me when I’m in this situation:

  • Acknowledge what has happened and your right to feel badly about it. Acknowledge your isolation and the part it plays in your feelings.
  • What are your options?
  • What will be the benefit or cost of your choice?
  • Before acting, set your limits based on benefit/cost ratio, and don’t step over your line in the sand.
  • Seek help from your support system whenever possible.

“But I’m totally isolated” you say. “I have no support system!”

Like most Migraine and headache specialists as well as many advocates, I believe that most patients can benefit from talking to a professional to gain a better, or just a different, set of coping skills. Nearly every community has someone a patient or their family can go to for advice, or even just to be heard. If you’re reading this, you have options. Many of these options are free, or on a sliding scale so covering the cost is not difficult. Need some ideas? Try contacting:

  • A local church. Even if you’re not a member, or even a religious person, most are trained and will be very helpful. Since they know the community, they can help with other ideas that might also be helpful to you. Sometimes they offer transportation to get you to someone qualified to help you.
  • Your doctor’s office. Ask staff to request a referral to a professional from your doctor. Don’t have a doctor? Walk into any local office or hospital and tell them what you need.
  • Contact your local Salvation Army or community assistance organization for those in need. Nearly every community has a way to help those with no resources at all, but can’t help you if you don’t ask them.
  • Your local health department often has information or access to professionals who can help you.
  • Your local emergency room or police office can offer you help if you feel you are nearing a crisis situation.

While you’re honing your coping skills with someone specially trained who has fabulous ideas, remember that, even when you’re alone, you are not alone. You have found us here, online. You know that we understand, even when friends and family don’t. We are here when others aren’t, and we are living this life alongside you.

I invite you to our forum where others are hoping to connect in a positive way with patients just like you, so they feel less isolated too.  The best way to begin is to introduce yourself by telling your personal story here. Then find an area on the forum that feels like home for you, or a spot that makes you feel comfortable in joining in the conversation. Anywhere! It doesn’t matter.

Not sure how to start?

They tell people that to write, one must begin by just typing. It doesn’t matter what you say, just begin…

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Still Smiling
    5 years ago

    It’s good to see the advice not to let our Migraines isolate us. It’s something that I fight for everyday. It’s so easy just to hole up somewhere avoiding social engagements, work, family commitments etc and then I typically end up feeling sorry for myself; especially when my work request that I work from home for my own safety. This I try to take on the chin, because it’s a far better option than being fired or having to take leave, but it just compounds my isolation, especially as it usually follows on from a bad bout of several and intense migraines.

    Reading your words I identified with being an implosive sort. Always. I can’t even remember the last time I was angry; whilst my situation is distressing or I have bad experiences, it’s never anger that I feel. More desperation, loss of hope or frustration and sadness. Sometimes, I wonder if it would be easier if I could get angry and vent, at the very least it would be justified.

  • Cindi
    5 years ago

    I am single. At 52 with chronic migraines, it’s come to a point where I needed to make the decision to fight for an early retirement from federal service which includes application for SSI. I’ve gone from missing one day a week to three. It’s not fair to my work Center, and it’s my realization that I’m not getting better as I expected I would. This past weekend I hit bottom. The decision gave me peace, but panic and fear broke through. I do have good friends that help, but the alone times can be terrifying. I think anxiety will soon be added to my chart… we’ll see as I’ve made an appointment with a counselor to help steer me through. It’s important to have people around that understand, both those you can put your hands on and those in an internet community… esp those who are where you are and can TRULY understand. They are worth their weight in gold… and skinny ones like Ellen are worth TWICE their weight!

  • tucker
    5 years ago

    This whole post is filled with very good advice. This summer, I was under a ton of stress from a cycle of constant migraines, horrible sleep cycles, and just being physically and emotionally exhausted. My whole body and inner being hurt. I was sad and tired and angry and exhausted from putting on a happy face for everyone at work and in my family. I was done with happy.

    I had to reach deep down but I finally asked my doctor for help not only with the depression but also for the name of someone to talk to about how to deal with it all – the pain, the lack of sleep, how to function basically – be a mom, a wife, a coworker, etc in the midst of this body I am living in now.

    Fortunately, the medication he gave me help with sleep and stress and I slept better and felt better within weeks. By the time I saw the counselor, I was like a new woman. I still had migraines, but even they had let up a bit. At my last visit, she said I really didn’t even need to come, but it was nice to ask about how to deal with some teenager issues – after all, they can add to the daily stress of life.

    So when that time in your life comes when you do sink down, it is time to call someone. I am by nature a happy, joking person. Not at all serious. Sure, I have my cranky moments just like anyone, esp if I’m tired or don’t feel good. But when cranky or sad won’t go away? Not good. Not good for you, your family, friends, or coworkers. You owe it to yourself to feel better, no matter how hard it is to make that first phone call.

  • wendy408
    5 years ago

    I have been married 42 years and my husband still doesn’t understand when I explode sometimes from the pain. It is so frustrating. I feel so alone. I too have problems communicating with my doctor. I always talk to his nurse. I recently wrote him a letter trying to get my concerns through to him personally. I haven’t heard from him so I don’t know if that worked.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Wendy408,

    Most men like to “fix” things and when they can’t, don’t understand why. Spouses can’t make migraines go away, and some have a tough time being supportive when they can’t make things better.

    Have you tried using a list when you visit your doctor? Many of us have trouble expressing ourselves when we see the doctor. Here is a link with tips in it to help with this issue; http://migraine.com/getting-help/six-tips-for-migraine-patients-at-your-doctor-appointment/ and http://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/.

    If you are having a difficult time talking with your doctor, is it time to see a new one? This article has pointers on how to tell if it is time for a new doctor; http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/.

    I hope this information is helpful.

    Nancy

  • DebbyJ56
    5 years ago

    I have suffered with chronic daily migraine headaches for eight yrs. I had to stop working five yrs ago. I tried to hang in there but it was impossible. I am home alone all of the time, my husband works full time. I can very seldom go out because I can’t drive most of the time. I constantly cancel appts. due to migraine pain. The only touch with the outside world is through the internet. My friends have dropped me. I still see my grandchildren but can only care for them in short doses. It’s hard not to feel isolated.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi DebbyJ56.

    It’s hard not to feel isolated when we have migraine disease and not easy to help ourselves when we feel alone.

    I’m happy to hear you are able to be with your grandchildren, I’m sure they bring much joy to you!

    Nancy

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