Ellie Donner-Klein

@ellie-donner-klein | contributor
I’m Ellie, a sophomore at Wesleyan University. I love cats, chocolate and music. I write about living with chronic migraines and chronic pain to raise awareness and combat stigmas about migraines and other invisible illnesses. 

Breaking the Migraine Cycle

There’s a state that migraineurs know that’s an in-between of being functional and non-functional, where you’re alive, but not completely there. You’re able to complete small tasks and make small talk, but still are forgetful and can’t fully focus. It’s almost like there’s a haze of brain fog surrounding you and no matter how much you rest and sleep and do everything you’re supposed to do, you don’t get better. For the past couple of weeks, I’ve been in between this half-functional state and full-blown migraine episodes. My to-do lists became an ever-growing mountain of tasks that no matter how hard I tried I couldn’t do. My meds weren’t fully stopping the migraines, and when they did stop, I’m not sure I actually recovered. I ended up having to make a choice this past week: do I get hospitalized or do I get an infusion and do the DHE 45 protocol of three shots a day for five days to break the cycle? It was a choice I haven’t had to make in almost two years. The last time I went to an ER for a migraine was the beginning of my freshman year in fall of 2015, and a couple months after that I had to do the DHE 45 protocol so I wouldn’t be hospitalized. But this time was different. This time was terrifying because it reminded me of what I had gone through in high school. I was reminded of how helpless I actually was in dealing with my illness. I can be doing everything “right” and taking care of myself, but to a certain extent, that doesn’t matter. I have a debilitating illness that affects my life and no matter what happens or how healthy I’ve been, episodes like this are a harsh reminder that there will always be times in my life where I can’t control what my body is doing. I ultimately decided to go in for the infusion and continue the DHE protocol at home. Infusions are never easy, and this was no exception. For the first time in my life, I was alone when I received the treatment. My parents were at home across the country, waiting to hear if I was being hospitalized and whether they should just get on a plane to be with me anyway. I always had someone be there with me to talk to me when the IV was placed, to reassure me when the pain of the medication hit my veins, telling me that everything would be OK and alright, even if it didn’t feel like it now. I realized it had been two years since I had an IV placed, my last one was in February of 2016 for my blood clot. When I got back from the infusion, I slept for six and a half hours straight, not knowing if I would have to come back in a day for a nerve block if the infusion didn’t work, and if that didn’t work I would definitely have to be hospitalized. Luckily, I didn’t. I opted for the DHE 45 protocol instead, because I’d much rather be giving myself shots than staying in the hospital for multiple days. It’s gotten easier to give myself the DHE shots over the years, but it’s a special type of hell to have to do them three times a day. DHE is nothing short of a miracle drug for me, it has been the only abortive that has broken cycles for me. But it leaves bruises, the only physical element of my illness. It leaves tender spots so that by the end of the five days, I may be clear from migraines but my legs are left sore and bruised. In a way, they are my battle scars. They are the only things I have to prove that what I go through is real to the outside world, the only physical reminder. Yet bruises fade, just as these episodes do. At the end of the day, I will be OK. At least, that’s what I’ve been telling myself. I’m finally clear but I am still very much dealing with the aftermath of this, both emotionally and physically. Throughout this whole ordeal I’ve been praying that I’ll be able to access the new CRGP antibody drugs once they’re released (hopefully in May and more on that in another post), so that maybe one day, I could have a healthy life. It’s hard because I once again realized that I “looked” functional. I was taking a test when I got a full blown migraine and my proctor struggled to figure out what was wrong with me because I looked fine but was having trouble putting sentences together. I looked fine, but I wasn’t. And that’s just the thing, I’m fine until I’m not. But those cycles of not being OK have been some of the most terrifying experiences of my life. When I am in those cycles, there is no foreseeable end. It is all pain, anxiety and fear. When I’m out of these cycles, I can have some more clarity about what’s going on, but it doesn’t make the heightened emotions that I feel much better. These pangs of loneliness, shame and fear come back when I am feeling OK, a lingering reminder of the times I am not doing well. I’ve been in love with songs that make feel like everything is OK when it feels like everything isn’t. The song “Happiness Is Not a Place” by The Wind and the Wave really highlighted that for me. The chorus goes: “And don’t you happiness is not a place—It’s the road you take—And who you choose to walk it with—And the grass ain’t always greener on the other side—It’s OK—But I wish it was easy like it sounds—Just believe one day—And your walls start coming down—Trust me things are gonna be alright.” To me, it’s a reminder of how our struggle does not define us, but it shapes our lives. That no matter how difficult, frustrating or painful things get, things will turn out OK. I say this for all of you as much as I do for myself. As for myself, I’m going to breathe during these next couple of weeks. I am grateful for the resilience of my body and my support systems. I’m going to breathe and start chipping away at my mountainous to-do list. Most importantly, I’m not going to give into those feelings that have been wearing down on me. I’m going to be looking towards the light at the end of the tunnel, because trust me, things are going to be alright.

Migraines: When People Make Unhelpful Comments About Your Illness

We’ve all heard about mansplaining. According to Merriam-Webster, it is when “a man talks condescendingly to someone (especially a woman) about something he has incomplete knowledge of, with the mistaken assumption that he knows more about it than the person he’s talking to does.” After a couple rough experiences this week, I started wondering if the concept of mansplaining could be linked to illnesses and the constant barrage of “Have you tried this?” and “My friend did this and her illness went away, why don’t you just do that?” While many of these comments are made with good intentions, they are tiring and often inaccurate. While I’m sure some of these lifestyle changes truly did work for some people, many assume that because you’re sick, you aren’t doing everything in your power to try and fix that. I think “illness-splaining” stems from the anxiety that other people feel about the unknown parts of chronic illness and the helplessness they feel. I’m not saying you should never listen to anyone, but it’s important to differentiate between your own anxieties and the projection of someone else’s anxieties onto you and your chronic illness. For anyone who’s chronically ill, dealing with these comments is a major part of our lives. Sometimes it takes all of my energy just to smile and politely explain that my condition is much more complicated than they realize. I can’t just take a pill or exercise my migraines away; I have a neurological illness. I can take steps to alleviate my pain, reduce inflammation in my body and avoid food triggers, but unfortunately, I’m stuck with this. My heart sinks when I have to explain that yes, I’ve seen doctors and specialists, I’ve tried almost every medicine out there and yes, I have tried many alternative treatment options. The question, “Do they know what causes your migraines?” is like a knife going into my heart. Most of the time I just smile and say, “I wish they knew.” I really do wish they did know. I’d love not to have to be bounced from specialist to specialist, going through test after test just to have a doctor look at me and basically throw their hands up in the air because they have no idea what is wrong with me. I know my medical history backwards and forwards, I’ve learned about different migraine treatments, protocols and drugs, I have educated myself as much as I can to try and find some sort of answer. Yet nothing hurts more than someone assuming I haven’t done everything I can to get better. I am not an expert by any means, but I am currently living with a chronic, invisible illness that completely rules my life despite my best efforts. To have someone who is completely healthy tell me that my pain is not validated, is not real or that I am not doing all I can is just rude. This week, someone actually told me that if I just ate at different restaurants, my food allergies would miraculously clear up. When I read this, I started crying. This person assumed I was just faking my allergies, that I just wanted special treatment. She doesn’t know about the days I’ve been unable to eat because I got cross-contaminated, or the hours of nausea I experience, or the painful migraines that come less than five minutes after eating something containing a trigger. She assumed I was not careful about where I eat. She doesn’t know I have learned to double and triple check when I eat out, sometimes speaking directly to chefs to make sure that what I am eating is safe. But that’s just the thing. So many people just assume – they don’t think to ask about what is actually true or even have a conversation to talk about stigmas and assumptions. That’s one of the dangers of having a chronic illness. There are so many stigmatized misconceptions that are still so prevalent. That’s one of the reasons I talk candidly about my illness. I’ve heard it all. My favorite is that all migraines are caused by stress. While it is true that some (emphasis on some) migraines are triggered by stress, it is hardly the main cause for many migraineurs. My response to the millions (literally) of times I’ve heard that is to laugh and say, “Oh, I wish it was that easy!” I’ve been thinking a lot about my life this week, and about how just a couple years ago, I was ashamed to talk about my illness. I was anxious that no one would understand, that the stigmas and misconceptions would cause people to view me differently. I used to feel helpless or get upset when someone would suggest something to me without any research or data to back it up. I get “illness-splained” all the time, but I’ve learned how to take everything with a grain of salt. That being said, it’s OK to try things people suggest to you. It’s your body, and who knows – it could help! But it has to be your decision, and you should never feel like you’re being shamed into doing something by someone who does not have any prior knowledge on your condition and hasn’t done any research. Living with a chronic illness is difficult. There are so many unknowns, so many variables that could fall out of place at any given time. You should never have to justify your pain, your experiences or your emotions to anyone. You are the only person in your body; therefore, you know what you are feeling. No one can tell you what pain you feel or how you’re feeling emotionally. Now that I’ve just written an entire post based on a word I made up, what do you think? Is “illness-splaining” something you’ve experienced? This post originally appeared on Chronic Migraine Ellie. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

Importance of Sharing Experiences With Migraines

I’m in a period of relative stability right now, for the first time in about five years. I am still getting migraines, but it’s easier to deal with them, and I am not as incapacitated and debilitated as I was before. I am so thankful for that. For the first time in years, I’m planning my future, applying to jobs and internship programs without having to worry if I won’t be able to follow through. It’s a relief, actually, to actually be able to think like this. I didn’t have this luxury for the second half of my teenage years. I mostly just tried to make it through each week. I’m still a part of many support groups online, and I write for my blog and The Mighty about my experiences with migraines. It’s become helpful for me to write, because when I was really sick I basically lost my voice. I lost my ability to speak coherently, write, read and focus. Now that I have regained my abilities to function, I am trying my best to speak about my experiences because I know how isolating and frustrating it can be to lose things we all take for granted in life. Nowadays, I feel a pang of guilt when I sit down to write. I feel a bit hypocritical sometimes, because I am not as sick as I used to be. I think of all the people who are currently sick, and how I am so lucky to be in the place I am in right now. I get so caught up in comparing myself to other people and their illnesses that I forget I, too, went through hell. Just because I am relatively healthier now than I was then does not mean my experiences and my feelings are invalid. We need to stop comparing our illnesses in terms of how severe they are, because chronic illness affects everyone differently. I’ve had people talk to me and say, “Oh, I get migraines, but not as bad as you do.” Why do we feel the need to qualify our experiences and apologize just because sometimes we meet others whose conditions are more severe or “better” than ours? There’s no prize for being the sickest, no title or headline for “winning the sick game.” No good can come out of negative comparisons. We already deal with enough shame surrounding our illnesses. All of our experiences with chronic illness matter, and we need to remind ourselves of that. I share my stories about my hospital experiences and the hundreds of med trials I’ve been on not to make other people feel bad for me, but to just share my story. Not to compare, not to analyze – just to get it out there. I often have to remind myself that for me, my illness was bad. When I was at my worst, I didn’t leave my house, slept for 15 hours a day and could barely leave my bed or even walk down the stairs. I lost everything about myself I loved. I lost my extracurriculars, my academics and all of the hopes and dreams I had growing up. I thought I would never be able to do anything meaningful with my life because I could barely function. I lost my identity. My chronic illness became my identity. I’ve spent the last two years rebuilding myself from scratch. Who I am now is completely different from who I was before I got sick. But I went through a period where I had to deal with everything I couldn’t mentally deal with when I was sick. I’ve experienced the helplessness, the loss of identity and control and the medical traumas. It’s a lot to deal with, for anyone. For me, writing about my experiences was a way to think through my life, a way to cope with the cards I’ve been dealt. I feel very lucky that right now my life is a bit better medically than it was for most of this year, and exponentially better than the last five years of my life. I am alive. That’s how I often describe how I’m doing these days. I’m alive. I’m getting through everything, one step at a time. My experiences are part of who I am, but they have also shaped me into the person I am today. I’ve known what it’s like to lose almost everything that’s important to you. It’s such a weird feeling knowing the world is at my fingertips, for the first time in forever. There’s still a part of me that’s terrified I’ll lose everything again. But if I live like that, I will never be happy. I’ll always be scared, terrified to dream because of how easily it may be taken away from me. One of my good friends has a saying: “if your dreams don’t scare you, they aren’t big enough.” That dream could be mustering up the courage to talk frankly with your doctor about a treatment you’ve heard about, planning an outing or, for me, looking into summer public health internships. I’m just starting to realize I can dream again. I hope you all can, too. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

Coping With a Multiple-Day Migraine Flare-Up

I’m sitting in bed after a week with minimal sleep, a four-day migraine, and a tsunami of emotions. I postponed an essay, fell back on readings, and cried more than I slept. I was incapable of giving myself a shot because the pain was too bad. I felt like a zombie just trying to make it to my classes. I’m tired. There’s no other way to put it. I’m exhausted. I’m tired of pretending that I’m OK, and I’m tired of feeling surprised when I get a bad flare. Why should I be surprised? This is my life. It’s not a glamorous or happy thought at all. My life is made up of moments where I am preparing for the worst. This week, after getting an abortive shot, I was talking to my dad. I actually made a plan to check myself in for a three-day acute treatment this weekend if the shot didn’t break my four-day-long migraine. There’s nothing that hurts more after being relatively stable for months than being in so much pain you can barely function. The worst part is that I actually second guessed myself this week. I worried about my life, and everything I’ve worked for in the past year and a half, being taken from me because I wouldn’t be able to function. I worried about what will happen when I am living alone after college, when I can’t give myself a shot, but can’t function enough to find a way to get to a hospital or my doctor’s office. What about all the times when I struggle just to walk back to my room? What about when I tell my friends I’m fine, I’m alive, but really I can barely make it out of bed, let alone my room? How do I mentally prepare myself for a reality I’ve already lived through? I was one of those migraine cases where doctors turned me away because they didn’t know how to help me. I lost all sense of stability and structure in my life, and my entire world went from anything my mind could imagine to the four walls of my house. The things I loved, playing violin and soccer, became just a memory because I didn’t have enough physical strength to even walk downstairs. I was basically on bedrest at 17 years old. I wasn’t sure if I was going to graduate high school with my friends, let alone go to college. I know I can, because I’m here. But sometimes, it’s not the fact that I have been able to get where I am, it’s the fact that in a second, I could be lying in bed sleeping for 15 hours a day with absolutely no memory for months until my brain recovers from the trauma that is getting seven migraines a week for months at a time. It is trauma, because it takes my body days, if not months, to recover from these flare-ups. It’s not just a headache, but God do I wish it were. Sometimes, I wonder how my life would be if I wasn’t sick, because sometimes I forget. Every once in a while, I forget I am a chronically ill person and feel normal. It’s a blissful but fleeting moment. How do I move on with my life when I’m constantly reminded of everything I lose if my illness flares up and spirals out of control? I don’t know the answer to the question, but I wish I did. I know I’m a strong person, because I have lived through some of the worst parts of my life already. I know if I lived my life expecting the worst, I really wouldn’t be able to function, because I would never see any reason to. I would lose all hope. Hope isn’t what gets me through my day, though. I get through the day because of my own strength, and because of the strength of my friends, my family and the online community of spoonies who, like me, have started writing and blogging about our experiences. I get hope from all of you because your support of me and my blog gives me a reason to keep doing what I’m doing. I am the happiest I’ve been in a long time. I’m also exhausted. The two are not mutually exclusive, and neither are my health and my life. We want to hear your story. Become a Mighty contributor here . Image via Thinkstock.

Why I Don't Apologize When I Need Help for My Migraine

When I first got sick, I was ashamed to talk about my illness. It was hard for me to ask for help, and I felt like I was inconveniencing everyone around me. It’s been about five years since I first started getting migraines, and about three years since they became chronic. I used to apologize for having to ask for accommodations, or for substituting something I can’t eat at a restaurant. Maybe I’m just growing up, but I’ve realized that I needed to stop apologizing. I never asked to have a chronic illness. I never wanted to live my life with the uncertainty that I may not be able to make plans or live my life the way that I want to. Yet that’s what happens with chronic illnesses — no one asks for it, but it’s something that we have to learn how to deal with. It’s like riding a bike — except for the fact that your bike has a flat front tire making it impossible to control. Every step of the way is bumpy, even when your life seems to be sailing a little bit smoother. So why was I apologizing for something I didn’t even have control of? First of all, I’m a chronic apologizer. I even apologize to inanimate objects when I bump into them. “Sorry” became a filler word for me. When asking a question, I would start with “Sorry,” instead of “Excuse me” or the question itself. “Sorry” became a word synonymous with distancing myself from my illness, adding shame to requests that were perfectly reasonable. Once I realized what I was doing, it was easy to change my attitude. There is no reason why I should be ashamed or embarrassed about my illness. It is as much a part of me as my passions and interests. I always felt that I had to apologize because I was “different.” I said “sorry” because my case was difficult and seemed to have no concrete, long-term solutions. I had to learn how to deal with doctors, insurance companies and medication side effects for a misunderstood illness that still needs a great amount of research to be fully understood. I was never a textbook case, nor will I probable ever be. Now, I don’t say “sorry.” I talk to doctors about my case calmly and clearly, because I have nothing to be afraid of or “sorry” about. I’ve already been through the worst. By not saying “sorry,” I’m taking control of my illness. To say it clearly, I’m living my life instead of apologizing for letting my chronic migraines make my life decisions. Chronic migraines don’t define me. They don’t define my passions, my hopes and my dreams. Rather, they’ve helped me see how strong and resilient I am, what my body has endured and how I’ve come out OK. If I never got sick, I would not be doing what I am today. I would not be writing this blog, or working to raise awareness about chronic and invisible illnesses. So no, I’m not sorry. Even though my life has been a roller coaster with no end in sight, it’s made me into who I am. I am a headstrong, passionate girl who doesn’t eat gluten, tyramine or soy and is set on changing the world. Follow this journey on Chronic Migraine Ellie.