I got sick in my early 20s and went largely undiagnosed for another 10 years. What's wrong with me is probably not the same thing as what's wrong with you. It's important to listen to your body and attune your habits to your own needs-- and that's kind of what I'm talking about how to do-- but everyone's different!
Conversely, some of this may even seem obvious, but the more time I spend around people, the more I realize how much we hide, ignore, downplay, and dismiss our symptoms. We're worse than cats when it comes to hiding them! And we're still worse at actually honoring our pain and taking care of ourselves. I'm lucky that my mom taught me how to do that-- I've realized as I've gotten older that a lot of people's parents don't!
Anyway, I started sharing more of these tips lately with friends as well as other CI (chronic illess) communities I'm a part of, and my advice is generally warmly received. I really wish I'd have had someone mentoring me thru this in the early days, so I made the guide that 20 yo me needed, and hopefully it can help some of you, too.
There is an awful lot of grieving involved with being ill, and it may be true in many ways that your old life is now over. You will have to make many changes to make room for your health. You may even feel that the healthy "you," the old you, is gone; or even that who you could've been was snatched away from you before you ever got to meet them.
Some of us feel that way, and some of us don't. But either way, against the odds, you ARE still here, and I'm glad that you are, even if you are sometimes not so glad for it these days. That's totally valid btw, and a lot of people know how you feel. Including me.
It comes and it goes. Just like life for any other person, you can continue to experience highs as well as lows, good days along with the bad ones. They may come less frequently, and they may be lesser, simpler highs than what you once knew, but they are just as worthwhile.
Fortunately or unfortunately, humans are capable of enduring the unbeleivable. You are capable of adapting to a new normal, and you'll need to hone that skill to help you remain well-adjusted in the days to come.
Rule #1 about being ill, though? You're also allowed to say that it sucks. You shouldn't have to endure it, you shouldn't have to be so strong, it shouldn't beup to you to bear so much on your own. It sucks... and you are going to live an amazing and capable life in spite of it. I know this. 2 things can be true.
And it does suck. I'm so sorry that you have to have a body. That's really all that can be said. But I believe everything you have to say about your health, and I believe in you, and I believe that we have SO much more value and so much more to share than society thinks we do. I know that you still have a fulfilling future that is worth seeing, even though you are in so much pain right now.
I am so sorry for that. And there is to say is, "I'm sorry," and "me, too." I'm so sorry that I can't just take it from you.
DISCLAIMER: I don't actually know. There's no easy answer to this.
When you're in mind-bending levels of discomfort all of the time (and particularly when doctors are dismissive of this), this is a question that doesn't necessarily have a straightforward answer. And I want to be clear: I don't know. I don't know your body, your current pain level, or what you should ultimately do. This is not professional advice, and I am NOT telling you one way or another to go or not go. I am saying that YOU have to become familiar enough with your own body that you can make your own choices about this.
But that's hard. Like. How? You can't just snap into it. So hopefully this helps.
This is something many of my loved ones struggle with, particularly here in America, where going to the ER when you don't need to is an expensive mistake to make. On the one hand, our pain is constant, so it’s easier for us to write it off as “normal.” On the other, being chronically ill means we are far more fragile medically speaking, and more likely to really need emergency care!
I still wind up at the ER more than the average human, but I’ve developed a sort of system to help decide when I actually need to go. I’ve had loads of people tell me this is helpful, so I wanted to share it here too.
Disclaimer: again, YMMV. I was undiagnosed until my 30s, and we now know that it’s a combination of POTS, MALS, and a handful of other stuff, but mostly those two things. Most of this won’t exactly be universal advice, but hopefully it’ll be helpful to some.
If you have some additional points i’ve missed, feel free to @ me [link to comments or whatever].
First, ask yourself: what are you hoping they’ll do for you at the ER?
If you’re not sure, you’re just in so much pain and you need help and you don’t know what, ask yourself: is it possible this is acute and NOT my chronic pain, as I thought?
I often call a nurse before I go to the ER just to say that I did. It puts me at ease. Pain can cloud our judgement; sometimes we don’t really know what “help” entails, we just know we need it. Sometimes the nurses can give you another, much-needed perspective. Sometimes they can tell you what tests might be done, and sometimes they validate your pain and tell you, “If X happens, then it’s time to go.” It can help immensely to have clear, concise instructions when you’re not sure what to do next.
And unfortunately, doctors do also use that pained confusion as a form of dismissal. Sometimes, it actually gets you better care to say, “My (partner/parent/the nurseline) asked me to come, they said they’re worried about (symptom)?” As opposed to, “Please help, doc, I can’t think straight, it feels like I’m dying.”
Saying you called the nurseline shows a reluctance to be medicated, and a persistence in being thorough, despite the nature of your symptoms. I hate that I have to offer this as a “tip,” it’s actually horrendous, but it sometimes does go a long way.
Which nurseline? This varies, and not all nurse lines are free to use. Check with your insurance provider first to see if they have one; if not, try Googling “[your state] nurseline,” or “[local hospital] nurse line,” or even “[location] free nurse line.” If you don’t like the first nurse you talked to, call a different line.
Another thing that helps is generally working on your body awareness. I know it’s not fun to be present inside of a body that is trying to kill you all the time, but learning to recognize the nuance in your symptoms, where you hold stress, and how you react to certain stimuli, can go a VERY long way in helping you determine what is normal, chronic pain and what is imminent danger.
Something that helps me with this is symptom tracking. I use an app called Bearable. You may think you have a pretty good grasp on your symptoms, but you’d be surprised what you can still learn from dedicated tracking. Bearable even generates charts & graphs for you, as well as the calendar view, which as a visual learner I find very helpful.
If you’re not already, I cannot recommend enough finding a support group for your condition, or— if you don’t know what it is— finding a group for generally chronically ill people. The things you can learn from others who are actually living with similar issues are invaluable, and that is where you’ll find the most tips & tricks about how to go on with your life. 99% of what I know about my conditions and how to live came from other patients, not from my doctors. Even just having folks to commiserate with makes a huge difference.
Finally, I also recommend therapy. Therapy is for everyone, btw, whether you have an acute problem or not, and a good therapist can help you develop that kind of body awareness I was talking about, as well as helping you develop skills to manage your everyday life in a way that suits you.
Plus it just helps to talk to someone with no judgment, particularly when so many of us have abled people surrounding us in our lives who just cannot fathom why we are having such a hard time with everything.