“You’re not as sick as you say you are,” and “Everyone gets tired sometimes too.” Stop Doubting Our Pain. It’s Not Sickness That We’re Faking, It’s Wellness.
If you’ve followed my posts, you’d know that I am facing severe migraines. It ain’t pretty. Sometimes I look like I’m in pain, as you can see in the photo below, but sometimes I don’t. Just because us chronic illness warriors don’t always look sick, it doesn’t mean that we aren’t sick. Pain often is invisible. But that doesn’t mean that it’s not there.
This photo is from a few days ago, but it’s basically what I look like right now. Well, actually I look worse right now. Yes, that is pantyhose tied around my head. I just need something to counteract all the pressure in my head. I look ridiculous, but you gotta do what you gotta do. Migraines aren’t pretty. I shall be using pantyhose as a migraine coping device, until a medieval head crushing torture device to manage this pain.
Before I address my life, I wanted to clear up some myths and misunderstandings that I’ve come seen come up between healthy and chronically ill people, as well as between sick patients themselves.
I’d like to note that when I talk about these things, about stigma or bad experiences in general, I am NOT always writing about my own life, but rather about what I’ve seen in the chronic illness community. Some of these things are things that I have personally experienced so I share them, but many are what I’ve seen happen to my fellow illness warriors friends. Even if these things haven’t personally happened to me, I write about them because I think they need to be spoken about. It’s hard enough being sick without the hurtful comments many of us come across, which is why I address them even if it hasn’t happened to me personally.
Okay. Here’s there thing.
Not everyone has the same symptoms for the same conditions, and I think that’s important for everyone to know. There have been so many dismissive comments where people say “If you’re using your computer, then clearly you don’t actually have a migraine,” and all sorts of things that make us feel like people think we are faking our symptoms.
No. Please do not doubt someone’s symptoms and tell them that what they’re feeling isn’t as bad as they’re saying it is. Adding doubt and questioning the validity of how we physically feel just worsens our mental health on top of our poor physical health. We shouldn’t be afraid to say we feel sick because we’re afraid of people minimizing our pain.
Whether it’s a migraine, fatigue or any other symptom, if we say we are in pain, it’s not kind to say “Well I get headaches too,” or “Well everyone gets tired sometimes,” because unless you live in a sick person’s body, you have no idea how any of us feel.
None of us are exaggerating. None of us want to just sit around doing nothing with our lives. A lot of the times, we do look okay, but that’s because we are wonderful actors. We’re not illness that we’re faking, it’s wellness and health that we’re trying to act out. We don’t want to seem like a complainer all the time, so we may often act like we’re never really in pain… but we are. Trust me, I rarely ever feel symptom free. If I ever woke up and felt okay, I’d be very confused and wonder if I’m in the right body.
It’s complicated, I know. Because a lot of the time, we don’t want to seem like Debbie downers and continually complain about how bad we’re feeling. We don’t want to bring everyone down, we don’t want to worry anyone else around us. This means that when we do come out and actually say we’re in pain, we really are in pain.
So back to my life. Migraines. Most people think that unless you cannot handle light, you really don’t have a migraine. That isn’t true. I have a migraine right now and I am writing this post on my computer. I do have a migraine, regardless of what anyone says. For some people, they cannot handle any sounds, or any sort of pressure, but light is manageable. Light is manageable for me right now. For some people, sometimes light is manageable if you wear sunglasses. But sometimes, light isn’t manageable at all. Sometimes I personally cannot tolerate any light. Symptoms can vary per person, and it definitely varies by the day, hour or even minute.
I’ve been trying to live my life lately, but it’s been hard. Like many of you, I’m tired of just sitting around all day, everyday. I want to do things with my life! And I have been.
I really push myself to do things, and it does take a toll on me, but I look fine. So when I’m out and about or just sitting around actively talking, I look like nothing is wrong with me at all. But that isn’t true. No one understands how hard I am trying to pretend that I don’t want to crack my skull open to relieve my migraine almost all of the time. No one sees me at the end of the day when I struggle to get upstairs to my room because I pushed myself too hard that day.
No one sees all the pills I take all day everyday to get through the day. And sometimes when people do see it, they question why I’m taking all these drugs because I look fine. The joke is, the drugs are the only reason that I have it in me to pretend that I’m okay. And even with the drugs, I still don’t feel well, and am pushing myself way too hard to seem normal.
All of this being said, I want to note that I LOVE my life. My life is awesome. I am doing better.
Yes, I have mind numbing migraines that can be unbearable, but that’s just ONE problem compared to the TRILLIONS of problems I’ve had before ON TOP of my migraines.
My POTS is stabilizing. I’ve been having a resting pulse varying from 85 – 105 beats per minute. This is a HUGE improvement from my old minimum of 135 beats per minute pulse. It’s been worsening a tad bit because of the hot weather and the fact that I have a cold, but the highest it’s going is 115. My neuropathy and ganglionopathy are becoming under control.
I am cutting down on Plasma Exchange frequency. I was going 3 times/week then 2 times/week but now I go even less! I alternate going 1 time/week and 2 times/week every other week. This seems to be working for me. My blood count is falling so I’ve been getting iron infusions, which has really been helping.
I can’t believe how much things have been improving. On top of my medical improvements, the scale says that I’ve lost 5lbs. This is HUGE because I’ve been trying to shed this Prednisone weight for ages. I struggle to exercise so you have NO idea how happy I am that I did manage to lose some weight.
Yeah, I know my migraines are bad and worrisome, but I do prefer to focus on what’s going right rather than what’s going wrong. If I were to focus on all the bad things in my life all the time, well they’re just endless and I’d never be happy.
I am in pain.. but that’s life. It’s something that I cannot change, but what can change is how people treat treat those of us who are sick, what can change is the stigma around chronic illness and chronic pain.
Just… when someone is in pain, don’t doubt them. Just because you may have worse symptoms than someone else, it doesn’t mean that another person isn’t struggling. Just because you’ve had a headache before, it doesn’t mean that someone’s migraine isn’t something more the headache that you’ve experienced. Just because a healthy person gets tired sometimes, it doesn’t mean that you understand and have felt a sick person’s soul crushing fatigue and exhaustion. It can be demeaning when you are sick and people say, “Well healthy people experience that too sometimes so there’s nothing actually wrong with you.” It’s hard enough being in pain without facing the social stigma that people don’t believe that you’re feeling what you’re feeling. When you’re in pain, you want support, not people doubting you.
It’s okay to be sick. It’s okay to be in pain. Is this something that we want for ourselves or anyone else? No. But it is reality and we have do deal with it. We have to find a way to cope with it. I think that starts with trying to remember that if ANYONE doubts your pain or doubts your illness, you need to remember that you’re not doing this on purpose, this isn’t you. You’re not choosing to watch life pass you by, you’re not choosing to stay home all day and do nothing. You’re not choosing to need help all the time. This sick person that you’ve become, this isn’t you, this is something that is happening to you, outside of your control. You are still you. You still have a personality and you’re still a person outside of your illness and your pain, no matter who doubts you or tries to minimize your struggling. Do not feel afraid to say you’re not feeling well or that you’re in pain. It’s okay. It’s what’s really happening to you. People are open about their troubles from unemployment to breakups and no one doubts their pain, so why should we doubted and be afraid to talk about our pain? This is what is happening to us, it’s hard to always pretend that we’re alright, so it should be okay to talk about our pain without fear of judgement. Pain and illness calls for support, not stigma and doubt.