We are excited to share this guest post with you from our community member, Eliana.
Eliana is a patient advocate for migraines who has been writing about her experiences for 2 years on her blog, Chronic Migraine Ellie. She is originally from Los Angeles, California and is currently a junior at Wesleyan University, double majoring in History and the Science in Society Program.
Vulnerability is not a listed side effect of migraines. Of all of the dizzying, nauseating side effects, one of the worst is dealing with friends and even family members who cannot fathom how difficult life is with migraines. Being asked the dreaded question of, “so how are you feeling now?” accompanied by an empty, empathetic look feels even more humiliating than being asked if I have a boyfriend now. Despite the twisted humor that I and other sufferers find in these squeamish situations, the real question I have to face every day is how can I find the balance between protecting myself and being protective of my friends and family? Hiding behind humor allows me to still feel in control. Managing what I tell people is another way that I can regulate the outside image that I present.
Maybe the reason why I’m so scared of showing the real truth about my illness to people is because I don’t like relying on others. When I’m really sick, I need someone to help me take my medication or give me a shot, to bring me water or help me if I can’t move. Being so vulnerable in front of others is probably the most difficult thing I’ve ever had to do. I like to think that I’m a strong person, but being helpless is the most terrifying feeling in the world.
This past July 4th, I experienced one of the worst migraines that I have had in awhile. I was in Washington D.C. for the summer, enjoying myself on Capitol Hill watching the concert and the fireworks. I was actually doing really well with the sounds and the lights until the sun set. A flood light came on and triggered a migraine. Not one of the oh, I have about 30 minutes before it gets bad migraines, but a full blown 10/10 migraine in about 5 minutes. I had no idea how I was going to get home, because at that point, I could barely put words together. A friend realized just how severe it was and made sure to get me home safely.
I could barely walk, I had to lean on him just to stay steady and upright. When we got back to my house, I collapsed on the floor. I couldn’t move. I was leaning against a wall, crying, but not just because of the pain. This was the first time that this friend had ever seen me with a migraine. We had been friends for a long time, but he had never seen me in a full blown migraine. The only half-coherent thoughts running through my head were, “what if this is scaring him?” and “what if he never sees me as the same person because he’s seen me when I was so incapacitated?” I don’t like letting people into my life at all, and I was convinced that despite the fact that I needed the help, his helping me was a mistake.
I was wrong, though. Surprisingly, this only strengthened our friendship, but the only reason why he saw this was because it was medically necessary at the time. This isn’t a normal experience for me. Usually, I like dealing with my migraines alone. It’s difficult to feel like a human being when you can’t communicate or move because of the pain. Now, I have some friends and my family who are amazing when it comes to my migraines. They have taken the time to educate themselves and try to help me in a supportive ways.
I’ve also lost friends because of my migraines. There are people in my life who do not understand what I go through on a daily basis. They don’t understand the pain, the nausea, the dizziness. They don’t get just how difficult it is to show up to my classes and leadership activities and smile like nothing is wrong. I’ve been called a “bad friend” because I have had to cancel plans at the last minute, or can’t give my some of my friends the attention they feel that they deserve because I need to take time for self-care. For a long time, I would feel hurt by people who I considered friends getting upset and saying hurtful things to me disregarding the illness that I deal with on a daily basis and how that affects my life. Not everyone can deal with the emotional turmoil and uncertainty that comes with chronic illness. To a certain extent, I get it. It’s not easy to have a friend with a chronic illness. But it’s also extremely difficult to be that friend.
I didn’t choose to have a chronic illness
My true friends know that when I can, I am there for them 100 percent. I’ve learned, though, that I don’t need to keep everyone in my life. I don’t have to be friends with people who make me actively feel worse about myself and my chronic illness. I used to want to please everyone around me because I was so scared of my friends accepting me and my illness. I know now that I am the only person who needs to be “okay” with my migraines. The more that I can tell my friends and family and educate them about the side effects, treatments and my daily life and fatigue, the more understanding that they can be. It’s still difficult to tell details about what I go through, and I definitely downplay the hardships of what I experience. Part of the reason why I do that is because sometimes it is just too difficult for my loved ones to hear about the pain and suffering I go through on an almost daily basis. It’s too painful for them to imagine me in such a terrible situation without being able to help. What we go through is traumatic, and to some extent, impossible to understand. And at the end of the day, am I ready to be completely vulnerable to help the people in my life truly understand? Are you?