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Living with Migraine

help with emotional struggles related to chronic illness

  • By luonnotar6

    I’ve been really struggling with the emotional aspect of chronic illness and was hoping someone on here might have some tips on how to cope. I’ve tried talking to a few different counselors, but mostly they’ve just kept me talking the whole time, occasionally asking questions, and not really offering much in the way of helpful advice.

    It’s kind of a long and complicated story, but I’ll try to summarize the best I can. I started getting migraines a little over a year and a half ago, completely out of the blue. They were very severe and lasted for several days at a time. I started taking sumitriptan, which would make them only last 2 days, but then I’d get another one the next day, and I had a lot of side effects from the medication. Because I had a big project I needed to complete and meetings to attend (I’m a PhD student), I took the pills multiple times per week just to function, plus some other things they had prescribed in conjunction with it, and ended up with a bad case of medicine overuse headache. Those were the physical symptoms. Emotionally, I was frightened and stressed because I didn’t know what was happening to my body, I had deadlines to make, the whole thing was putting a strain on the relationship I was in, the sumatriptan was giving me anxiety attacks… basically I was not super fun to be around.

    At the time my migraines started, I had been in a relationship with someone for almost four years, and we’d been living together for two. He would act kind and caring sometimes, but other times just get really angry and blow up at me, especially if I was being too needy or getting in the way of his work, telling me the kindness had just been an act because talking about the problems would be too stressful and time-consuming. It wasn’t just because of the migraines – I had other chronic pain issues where I needed help with certain household tasks, and most of the problems with the relationship had already surfaced by the time my migraines started. In any case, our lease was going to be up (about 3 months after my first migraine) and he would smile and talk about how excited he was to be finding a new apartment together, and then one morning (2 weeks before the lease was up) he just left a note on the kitchen table, took the car we shared, and disappeared.

    So, I was too sick to get out of bed (or really to take care of myself at that point), had no car, and somehow had to find a new place to live in two weeks. I had moved to the city we were living in to be with him and didn’t really know many other people there. The only real option was to move back in with my parents – 2,600 miles away – at age 30.

    While I’ve been really grateful that my parents were willing to help me move, let me stay with them, and support me financially, it hasn’t been easy living with them from an emotional standpoint. Physically, I’m thankful that my condition has slowly improved – it was still pretty bad for a number of months after the move, but after giving up prescription meds including ibuprofen and trying some naturopathic treatments and a really strict elimination diet the migraines are less frequent and severe, although I do still get them, and am still dealing with chronic fatigue and other issues. But mentally – well, I was a complete wreck after being abandoned and then forced to move and basically give up the life I had been living. I’ve had to make a lot of lifestyle and diet changes to reduce the migraine frequency, and it’s really affected my sense of self-worth not to be able to live normally anymore. My parents were kind at first, but after a while I could feel them getting frustrated with me more and more frequently.

    Right now there are some days where I can barely hold myself together because I feel so alone and hurt. My parents are always getting frustrated with me for something or other, and when I try to explain how I’m feeling the response is often “there’s always an excuse,” or “well, I don’t feel that great either but I still do this and this and this.” I can understand the reasons for their frustration – I know it’s not easy for them, but it feels like no mater how hard I try it’s never good enough. I don’t feel respected, or like they really listen or take what I have to say seriously. I’m getting a lot of negative comments about things I could/should be doing better, but not any positive comments to balance that out. I often feel like I’m being attacked or ganged up on, with no one there to understand how I feel or support me. Between that and what happened with my ex-boyfriend, I struggle a lot with self esteem, feeling totally worthless, and it’s been hard to find motivation to keep working on my degree and trying to be more active. When I feel attacked I tend to retreat into my shell and isolate myself, even though I’m a social person by nature, just because I feel so shaken and hurt and emotionally overwhelmed.

    I’m not really sure where to turn to for support, or how to feel motivated, inspired, and good about myself when I’m not receiving that feedback from others. I don’t know how to get my self esteem back – it’s hard to feel like I’m worth something when it doesn’t seem like anyone else thinks so, and when I’ve lost the ability to do alot of the things that I used to. I feel like I’m no fun to be around anymore – I used to be adventurous and free-spirited, and now I can’t go out to eat at restaurants or go outside in bright sunlight, or places with flashing lights and/or lots of noise, I have to be incredibly careful about what I eat and when… That makes it hard when it comes to friendships let alone finding a new relationship someday. (People tell me to “just concentrate on getting better” but what if that never happens? Don’t chronically ill people deserve to kind of have that love too? But it’s hard for me to believe I have a chance when I come with so much baggage – who would be willing to even try a relationship with me?)

    More than anything, I’d just like to feel that there’s someone out there who thinks I bring some kind of joy or happiness to their life. I know, intellectually, that my parents love me, but I don’t FEEL loved when they’re always getting frustrated with me. I want to feel like someone out there thinks I’m worth something, or at least learn how to feel like I’m worth something even if no one else does.

    Sorry for the long and rambling post – I guess I’m not very good at being concise. I just thought I would post on here in case anyone else has had similar struggles and/or has any advice to offer. Thanks for reading!

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  • By Nancy Harris Bonk Moderator

    Hi luonnotar6,

    Thank you for reaching out and sharing your personal story with us. We’re glad you’ve become part of the Migraine.com community!

    Coping with any chronic illness is not easy, but when you add the kind of upheaval you’ve experienced it can really complicate things. You mentioned you’ve seen a number of counselors without much luck. Not all counselors are created equal and finding one we “click” with can take a bit of effort and research. May I suggest finding one who specializes in chronic illness and/or pain? I see a counselor who specializes in chronic illness/pain (only occasionally now) and she has really helped me – through a divorce and chronic illness journey.

    I’m sure it’s difficult to be back at home at this stage in your life and I’m sorry your parents don’t seem to get it. Would it be helpful for your parents to read about migraine so they can have better understanding of it? Many people who’ve never experienced a migraine think its simply a bad headache. Another thought would be to bring them with you to your next doctors visit so they can get a clear picture of what’s going. Let me share information with you that may be helpful; https://migraine.com/blog/family-and-friends-that-do-not-understand-migraine-disease/ and https://migraine.com/migraine-and-mental-health/managing-migraines-and-relationships/.

    Finding a support network, whether is person or online is an important part of having any chronic illness. You’ve taken the first step reaching out here – good for you! You’re not alone in wanting to connect with others and be supportive. Check with your doctor and local paper for in person support group.

    Yes, people with chronic illness “deserve” to be loved and I understand wanting to “bring some kind of joy or happiness” to someone else. However I’ve learned that taking care of oneself must come first, which has never been my forte. If we don’t take care of ourselves, we won’t be able to spread joy to anyone else? Does that make sense? This article may be of interest as well;https://migraine.com/living-migraine/emotions-an-interview-with-psychotherapist-nathan-feiles/.

    If you haven’t had an opportunity to see a “true” migraine/headache disorder expert, I would encourage you to do so. Here’s why – neurologists may be fine doctors but have difficult time being experts in one area because they treat so many different conditions like multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache disorder experts are just that, experts in one area – migraine and headache – and are board certification in headache medicine which is different than being certified in neurology. Let me share some information with you on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope you find this helpful, please let me know how you are doing,
    Nancy

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  • By Savta45

    Hi Luonnotar6,
    I just read, with such sadness, your very emotional & difficult story! You, my dear, have been through & continue to go through, agony! I’m so very, very sorry that this has been the case!
    I agree with Nancy, it’s great that you found this site. If nothing else, it will let you know that you are not alone, that there are others who share at least some of your problems, the chronic migraine, specifically, & all the issues that are subsequent to that condition. As Nancy also demonstrated, it is also a source of information, which, hopefully, will be of great help to you.
    I can tell you that, even though I have not, thankfully had as horrible an experience as you, I too suffer from depression which has been exacerbated significantly by the consequences of the chronic migraines I suffer from. I can’t count on going anywhere or doing anything. I’ve missed out on so many outings, family get-togethers, I can’t begin to tell you. But, I can’t even commit to do any volunteerism, which I had been hoping to do in my retirement. Btw, I had to retire early, on disability, because of the migraines. I can’t even count on doing normal housework on any kind of a schedule, because of them.
    My husband supports me, thank G-d, 99% of the time. Occasionally, he gets frustrated with me & feels overwhelmed with everything that he has to do, & everything that I can’t do, or at least that I can’t do on a regular basis. He can be kind of rough on me, emotionally, about this, & it’s come up quite a few times. I try to do as much as I can do, when I’m able & hope for the best, but to some extent, I’m always a bit nervous.
    I will end in a minute. The last thing I wanted to ask is if you believe in prayer at all? I do, & sometimes that is the only thing that has gotten me through. I have also got other chronic medical problems & they have been potentially life threatening in the past. I know it sounds trite, but I had to cope somehow, & I started praying when I first started getting the blood clots, fervently & regularly. I have to think it helped. After all, I’m still here.
    My very best wishes,
    Ruth

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  • By Carolelaine

    Hi Luonnotar6,

    I can relate to your troubles so well. At 29 I found myself divorced and living with my parents along with my 2 toddlers. My collage age sister was also living at home. The stress of combining 2 families was overwhelming. My migraines, depression and anxiety weren’t enough for me to have to deal with I was also coping with debilitating back pain. Years later my daughter (who has a chronic condition that causes extreme body pain and has left her barely able to walk) and her boyfriend lost their apartment and moved in with me, my husband, and son (who has Asperger’s and Diabetes). I am no stranger to stress and I don’t have all the answers, but I can say that you need to take care of yourself however you can. If you are unable to work full time, perhaps a part time job with low stress would be good for you. Maybe volunteering at something you love. Make your room a sanctuary where you are comfortable and stress free. Get out of the house as much as you can. If you can’t communicate well with your parents find a therapist that you can talk to. Your migraines are fairly new to you, you need to grieve you past life, and find a way to live a happy, but different life than you had before. I also recommend finding a doctor who specializes in treating migraine, someone who will take the time to really listen to you and who is able to look outside the box for treatments.

    Best of luck,

    Carolelaine

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  • By scarletlove

    Ouch. My worst fear is that my partner will leave me due to my chronic pain and migraines. 🙁 I feel your pain.

    We almost split last year when I was going through an intense medication rebound headache period (had a migraine for TWO MONTHS SOLID – yes I got a bit moody and felt hopeless). Close to devastating, especially when he held up the proverbial towel threatening to throw it in because he “could not live with a victim anymore” and all he wanted was to see my HAPPY. Which was impossible with a 24/7 migraine attack for 2 months solid.

    I luckily reached out to multiple therapists to help BOTH of us get through that rough spot. I am a relationship coach myself, so I hired one of my mentors to coach me and my partner together which frankly saved our relationship. I also went deep into psychotherapy for myself so I did not rely on my boyfriend to be my ONLY emotional support. It was too much for him to bear, seeing me in agony day after day.

    My advice to all is to hire a relationship coach to help you and your partner navigate your migraine issues LONG BEFORE it is too late. Our coaches saved our relationship! But do NOT wait until the last minute, get help so you have tools when you need them. xo

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