The Phrase I Don't Want to Hear as Someone Dealing With Chronic Pain

“Why are you so ungrateful? There are people worse off than you.”

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That is one phrase that just makes me mad. Yeah, I know there are people who have it worse than me. I know there are people who don’t have a family, or school, or a house, or a car, or running water or healthcare. I get it. “Count my blessings.” And yes, as somebody who lives with chronic pain, we do have to “focus on the positives” of what we have and can do in order not to be miserable, but I’ll be damned if there are not going to be days that I am just plain depressed. Now when it becomes a daily pity party, that’s a little unhealthy, but not every day is going to be sunshine and rainbows simply because I can “count my blessings.” Maybe it makes me selfish, spoiled or immature, I don’t know. But I do know that we are all entitled to feel how we need to feel, and people have to stop telling us not to feel that way.

I have so many blessings. My life is full; I have so many opportunities and so many privileges a lot of people don’t have. So I’m grateful, and it’s humbling to know that despite all my “issues,” I do still have a lot. But here’s the thing: When you have a chronic, incurable, untreatable disease, counting your blessings doesn’t always work. You can’t always say, “Well, at least I still have my health.” You can’t always say, “At least I still have [insert hobby here].” You can’t always say, “At least I still have so-and-so person.” You might lose all those things people cling to when they lose their job, a family member, a pet or whatever.

People might leave you when you have a chronic disease, or they don’t want to be around you any more: You’re no fun, you can’t do anything, you take too many medicines and you’re a burden (financial or emotional).

And frankly, you don’t want to be around those people anyway because they’re so insensitive and unsupportive. These are the people who tell you, “Focus on the positives” or “It’s all in your head.” So you mourn the loss of all those people. And then you mourn the loss of everything else, your old life. You have to take up a new life — one where you can’t do your hobbies or go out. One where you’re 22 years old and have to have a daily pill manager so you don’t forget to take all your meds and feel even worse than you do. One where you have to choose between terrible side effects or feeling better. One where you have to take pills for the side effects of the other pills. One where everybody who isn’t a doctor has an opinion on what you should to do make yourself better, and if you don’t try it, they tell you you’re not trying hard enough.

The one where you have to take a nap after work just to be able to manage your home. The one where you have to eat or avoid ridiculous foods because random things make you feel sick, but people think you’re “just being dramatic.” The one where simply going to the grocery store makes you hurt. The one where asking for pain medicine is stressful because you don’t want the doctors to label you an addict. The one where you constantly feel judged and like you have to hide who you really are (from family, friends and yes, even doctors) because people who don’t experience it simply can’t understand.

So please don’t tell me that I have it better than other people. I know I do, and I already feel guilty for feeling sorry for myself since I know there are people who have worse issues than me. I have my family, I have a working car and a great home, I have my dogs and cat and my boyfriend, I have my computer and my video games, I have running water and electricity, I have healthcare.

But I also don’t have my hobbies: I had to give up playing violin and piano daily due to pain, I had to give up running with my dogs because of postural orthostatic tachycardia syndrome, I had to give up drawing because my wrists have dislocated so many times that it permanently hurts to use them, and since my job revolves around using my hands, I have to save them for work. I have to worry about things college-aged students shouldn’t have to worry about. I still have to live with daily pain and work despite how I feel. I still have to do my best to function so I don’t get any more judgment and criticism than I already do.

There are people who have more problems than me, but I’ve lost my health, I’ve lost the ability to care for myself and I’ve lost my people, while I’ve gained people who don’t believe I’m sick, a lifetime of pain and limitations, a fear of letting people get close because so many have decided that being friends with somebody sick is too much, and the nickname “the pill lady” because everywhere I go I have my meds that sound like a million maracas in my purse.

And worst of all, not only do I have to deal with the new physical limitations of my life, but I also have to deal with all the judgment that comes along with that — the hatred from the public for needing a handicapped space when you can walk, the “but you don’t look sick” comments, the snorts and scoffs from the people close to you when you try to tell them you want a wheelchair, and the “it’s all in your head” comments from doctors and family members. Some days it’s just too much, and I have to feel sad. I have to mourn the life I had, and I have to process the emotions that result from insensitive people.

Just because I have so much doesn’t mean I haven’t lost so much, and it doesn’t mean I can just focus on the positives not to be sad.