Having chronic pain means many things change, and a lot of them are invisible.
Unlike having a terminal illness or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion. Sometimes I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about my family, and my friends, and I’d still like to hear you talk about yours, too. I’d actually prefer to hear about what is going on your life because for me, it’s a good distraction.
Please understand the difference between “happy” and “healthy”. When you have the flu, you probably feel miserable because of it, but for me, I’ve been sick for almost a year now and I can’t be miserable all the time. In fact, I work really hard at not being miserable. So, if you’re talking to me and I sound happy, it means that I am happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or that I’m extremely tired, or that I am getting better, or any of those things. Please don’t say “oh you’re sounding better! or “but you look healthy!” I am merely coping. I am sounding happy and am trying to look normal. I hurts me to have to continuously explain that I am not going to get better.
Please understand that just because I am exercising again doesn’t mean that I am not in pain while I am doing it. Understand that being able to stand and walk around for hours still causes me pain. Understand that I have gotten really good at hiding how uncomfortable I am. And please, understand that my exercise journey has been the most therapeutic for me. I know that exercise can be more harmful than helpful to other fellow IC sufferers, but for me it has greatly improved my symptoms.
Understand that I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Trust me when I say that things have been very lonely since I got sick and please understand that I really do want to be there. I appreciate the people who have modified plans to make them more chronic-friendly and the ones who have made an effort to stay in touch. I do not appreciate the ones who have mocked me for being physically incapable of doing certain activities.
Telling me that I need to do some things to get my mind off of it frustrate me to tears. I am working with my team of doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time which can be intense. You can’t always read it on my face or in my body language.
Also, chronic pain may cause secondary depression. Wouldn’t you get depressed and down if you were hurting constantly for months or years? I am trying my very best to be content with my situation but I have days that I struggle with it more than others. There is not a night that goes by that I don’t stay up thinking about how this is as good as it’s going to get for me. It’s not going to get better and there’s a chance that it could get worse. I’m terrified.
Please understand that if I say that I have to sit down, lie down, stay in bed, or need to take my pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. I know that I can be a bit of inconvenience at times and know that I feel bad having to slow others down because of it.
Chronic pain does not forgive. If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought and it’s not because I don’t want to get well. Lord knows that isn’t true. I’m hanging onto the fact that 6% of people can recover from this. I pray that I will be in the 6%. In all likelihood, if you’ve heard of a cure or even tried it, so have I. In some cases, I have been made sicker, not better. I can’t go through another flare that came on from an attempt at curing myself. Understand that every failed attempt makes me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Please understand that I don’t mean to push you away. I have a tendency to do that. Please stay, understand that I struggle to talk about it. If I do start talking about, know how hard it is for me. Know that I am comfortable with you. And if I don’t talk about it, know that just because I don’t say what’s wrong, doesn’t mean that there isn’t something wrong. I am always thinking about it, always.
Finally, please treat me the same way you did before I got sick. Call me to chat. Invite me to hangout (even though I may have to cancel) it’s still nice to feel wanted. Chronic illness life is extremely lonely. If you want to help me in any way, just be normal with slight modification for my pain.
Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
I know that I have asked a lot from you, and I do thank you for listening.
