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Living with Migraine

In my 20s, feeling so alone. Anyone out there?

  • By steffacake

    I’ve suffered from migraines since, we think, I was pre-verbal. I have done really well academically despite missing ridiculous amounts of time from school… But, my social life has suffered hugely and I feel so alone. I fell out with my friendship group before leaving high school and when I got to university I struggled to make proper friends. I moved in with a couple of girls but then my migraines got very bad, and they completely didn’t understand it (an experience I’ve had throughout my life). My migraines can go from 0-100 in the space of 45 minutes but they always felt I was lying when I cancelled last minute on plans, or didn’t go to classes. Since uni, I’ve moved back in with my parents. I’m struggling to find a job, and I’m very isolated living with my parents.

    I feel like my migraines sap all my energy to do difficult things like join a group or a class in order to meet people. It’s easier to stay inside and not go through the stress, but I find that that leads me into a spiral of depression. I’m a really kind, happy, generous person. I feel like I have a lot to give in a friendship. But I’ve never found someone who makes the effort with me or sticks around.

    I have a boyfriend who I’ve been with since we were young, and he gets the migraines and is kind about it. But I can feel myself relying on the relationship so much. When we argue, it feels like my world is falling apart because he is my emotional strength and it feels like if he goes, I’ll just be abandoned and alone. I’ve even tried to make friends online, but it just feels like no one out there wants to make a genuine connection and it’s all about sex.

    I’m just feeling so isolated and helpless. Any advice, any thoughts?

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  • By ShannonAW

    Hi Steffacake,
    I’m another female migraine sufferer. I’m in my early 50s and have also had Migraines from infancy. I totally understand the feelings of isolation that you have. Interestingly, I have a husband, this May we will be celebrating our 32nd anniversary. Funny, but after all of these years, one would think my husband ‘gets it’. Well, he does and yet he doesn’t. It’s a very overwhelming thing for non-sufferers to keep all of the details in mind. They get busy with all of their own daily stuff and if we’re functioning they just take it for granted that we’re in the swing of things too (the same way we do when they are going about their routines) so it’s full steam ahead, everyone is on board.That’s why it surprises my husband,or it used to back in my 20s my migraines were intermittent but steadily got worse & worse until they became chronic daily in 2008. Even though he’s been with me all these years, he still gets busy and seems to forget how badly I’m hurting physically and emotionally because the migraine has literally robbed me of EVERYTHING and when we talk about this disease he is still in shock and awe at all of the details of each level of the disease. It’s just as easy to feel isolated and alone in a medium sized family as it is in a young relationship. That’s the result of the migraine disease’s affect on our individual abilities in a group setting. It really sucks. There are many school functions for our kids that I don’t get to go see because the migraine won’t allow it so my husband attends them alone while I sit at home alone and my kids understand yet they don’t know how to handle it and discuss the event with me because I was not there so I don’t have the true understanding of it; I’m missing the connection. That’s a terrible side-effect of the migraines, the lost connections. So far what we’ve done is my husband records & photographs as much of the event as he can & when they get back home we all sit together in the living room and talk and talk and watch the recording and look at the pictures and I ask tons of questions. It’s not the same but it’s the best I can do. Then when no-one is around I cry it out. I have a pain psychologist and he is very helpful because he listens and understands. I haven’t found any other way to combat the lonliness except for sites like this one. It has become a beacon in the dark for me. I had no idea there were so many others out there with the same pain & problems that I have. In an odd, quiet way this web site has become very important to me and there is a sense of connectedness here. It’s like a support group and it’s very special. We need as many special things as we can get to jump in here and start talking with all of us in the various forums. I promise you’ll feel a bit better. Also, I don’t know where you are in treatment and meds but with any chronic illness or pain comes depression in some form and I’ve found that an anti-depression med has been helpful as well. I’m in a yucky place with how I feel about life with migraines right now & I don’t want to bring you down with my depression so I’m going to tell you the standard lines of ‘hang in there’, ‘don’t give up’, ‘try to do the little things that bring you joy and that will help.
    I color. I know it sounds odd but I’ve actually colored my entire life and it has become a good way of expressing my feelings and creating something beautiful and some days that’s the only thing I accomplish so that helps fight the depression from the feeling of insignificance since I’m a prisoner of the migraine and rarely leave the darkened rooms of my home.
    KNOW THIS: YOU ARE NOT ALONE AS LONG AS THIS SITE EXISTS! WE CAN TALK ANY TIME YOU WANT. YOU ARE IN MY PRAYERS. GOD BLESS YOU

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  • By Talenyn01

    Hi steffacake. I feel your pain, literally (lol). I’ve had intermittent migraines since I was a child and they became chronic in undergrad. Until I read your post I wondered whether I was the only 20-something dealing with this. I haven’t had a relationship or even a real friend since high school because I just can’t go out to social things. It’s even worse now that I had to go on medical leave from grad school and move in with my parents (who live in a pretty rural area). I’m not sure how to fix being depressed about it (I’ll let you know if I ever figure it out and you let me know if you do). However, something that has helped me is getting a dog. I recently adopted a lab puppy and she’s helped a lot. She obviously can’t stop the pain but the fact that she is always there for me and clearly cares (she licks my face when I’m crying and lays at my feet when I’m bed-ridden) helps immeasurably. Her silly antics and goofy puppy grin are the only things that make me smile these days. Maybe a fuzzy cuddle partner could help you too?

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  • By jennys

    I stumbled upon this post and the amount it related to myself and my life was unbelievable. I’m 21 years old in a few days, I’ve suffered from migraines for about 6/7 years now (I was lucky to have a pain free childhood) and I feel just as helpless as you.
    I totally get what you’re saying about feeling so alone. Nobody but other migraine sufferers understand, and unfortunately a lot of them are older and don’t deal with the same ‘trivial’ things is 20-somethings do (not to say they don’t make amazing friends too!! They always give great advice- see comments above mine). My friends try their best to get it but they just don’t.
    I’m in the same boat as you (live at home, leech off my parents, can’t commit to anything, depressed, so on and so on) and if you want a friendship or someone to talk to that seriously understands, I’m here for you! 🙂

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  • By SandyWylie

    Hi Steffa, Today may not be a good day for me to reply. I’m feeling about as low as I’ve felt in a long, long time. Forgive me for not offering encouragement. Perhaps it will help you to know you’re not alone. I’ll try to remember to come back on a better day and offer positivity.
    I’m 52 and have migraine and headaches since childhood. I have relatives who were also debilitated by them, so they are hereditary for me. I’m at work in a stupor, when I’d rather be at home in bed. Going on day 2 of what feels like the worst migraine I can remember. But I had to be at work. I have missed so many days, I owe my employer 40 hours, because he’s been generous enough to let me go into the red on my PTO. But I’ve been told I can go any deeper “into debt” with time off, so any more missed days will cost me $, which I simply can’t afford.
    I’m also missing the memorial services of a close family member, 1) because I can’t miss work, and 2) because I would go home to bed before I went to be with other people. My family thinks I’m either avoiding them or a hypochondriac. So I only get judgment from them, especially when missing a very important family event.
    My house is filthy, and falling apart. I used to keep it spotless and take care of repairs immediately. But I don’t have the energy any more, or I’m laid up with migraine.
    I am very grateful for my best friend who is also a migraineur. She is my rock, and completely understands. But she’s not able to solve my concerns about employment, and she can only offer empathy when I talk about the crumbling of my family relationships.
    I don’t always feel like this. I do have a lot of days when I feel productive and independent. But I’ve developed a fear that doesn’t seem to go away. What if I can’t work? I am single, and have to depend on myself for all aspects of my life. I become afraid.
    I battled depression starting in my tween years, which lasted through my mid-30s. Something changed and I was able to get to the other side of it and stay there since about 2001. But it feels like it’s looming again.
    I hate expressing all of this – the voice in my ear tells me I’m just feeling sorry for myself – that I should get over it. I grew up with stories of a grandmother who was paralyzed from the waist down, due to a hunting accident “and she never once complained!” So talk of pain or weakness has never been acceptable. As a child, my headaches were often minimized.
    But I felt like I needed to take a risk today and speak the truth about what I’m experiencing. I think I need to hear that other people go through this, and come through to the other side.

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  • By melindas

    i feel your pain…it is a struggle bus ride every day for those of us that try to make it through with migraine symptoms affecting our every move. don’t feel too bad about being with your parents…they still need you just as much you may need them (whether either of you say it or not). i know that you are not alone because you found this home for the rest of us, so welcome home. i think we all decide every day exactly what we can and can’t do…it may be a lot or very little but the hard part is just to decide to do it. i find myself letting go of things i used to think were important like grocery shopping or laundry, but i can always eat out and as long as i have clean undies…i’m good. i try to remember that everyone has issues and some people are way worse off than me…so i try my best every day and i have become ok with that…that is what you have to work toward. i meet someone everyday that i can discuss my migraines with…its like they are out there but if we don’t put our issues out there for them to see, they won’t share their issues. migraines are the most common issue for women so just look for us because we are out here.
    MY BIGGEST ADVICE FOR YOU IS JUST DON’T GIVE UP…on help..on remedies..on therapies..on friends..on life..on the web friends who are here for you..on the fight you have to have every day..and on the hope that there are better days ahead.
    i have lost too many days on all of those things myself and i will never get them back, so that’s my advice from someone who has lived and suffered for 38 years…i don’t want you to look back on that amount of time that i have and have the same regrets as me. for me there wasn’t a place like this for me to go, so use us here and live your life the best way you can.

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