A letter to loved ones

This will be very long. It needs to be long. This is an open letter to everyone in my life, both those with and those without chronic pain. There is just so much that sufferers don't want to or cannot put to words. We cope largely in silence, sometimes because we don't have the words to say what needs to be said, sometimes because we realize that our needs are enough to discourage connections with those we care about. Whatever the reasoning, there are things that need to be said, and this is to address some of those issues in my life.

Dear Loved Ones,

Most people, whether they are aware of it or not, know someone who suffers with chronic pain. Despite this, most people don't have any idea what that means, because unlike obvious illnesses or injuries, chronic pain tends to be invisible. Facial expression and body language aren't always reliable indicators, because many with chronic pain don't want their suffering to be visible, and work hard to suppress those signs. You can't see a headache, you can't see back pain, you can't see what we feel, and that sucks. It sucks because it's easy to ignore or dismiss something you can't see, but we still feel it. It sucks because you never know when we hurt unless we tell you or let you see our pain, and we don't always want to be seen as complainers.

So perhaps it would be helpful to share some information with you, the people who might care about me. I hope this will be as useful to you as to me, since that's the whole point. It can be difficult figuring out how to deal with someone like me, who has chronic pain, just as it can be difficult to admit extensive needs. I share this out of love and care, not to induce shame or guilt; I want this to make our interactions more peaceful and pleasant for both of us.

First, and perhaps most importantly, please understand that I don't mean to be negative. I don't mean to be short with you, or seem frustrated or angry, and I do my best to avoid taking anything out on you when it's not your fault. When I'm in pain, though, it's very difficult to be the person I want to be. I try very hard to give you the respect and appreciation you deserve, but sometimes it's just difficult for me to be as patient as I'd like, sometimes it's tough for me to see the silver lining, and it's sometimes very difficult to ignore the frustrations in life. Think of the last time you had a really bad headache. Now imagine it hasn't gone away in years. That's really frustrating, and that's my life, in addition to all the normal stresses like school, relationships, and money. I'm just like you, just with pain.

Repeat the above with back pain, leg pain, arm pain, stomach pain; any kind of pain. This applies to all chronic hurt. Many sufferers, myself included, have more than one kind of pain.

I have bad days, just like you do, it just might happen a bit more often for me. My body is a prison, and I'm serving a life sentence for a crime I don't remember committing. I deal with it as best I can, and I cope, but it's a struggle to stay positive, knowing that this will probably never change; most chronic pain is never cured, the best we can usually hope for is symptom reduction, and even that is a dream to many. This is my life, and I make as much of it as I can, but I can't do all the things you take for granted, and that fact is painfully obvious to me. Once in a while, I like to feel sorry for myself, and wallow in self-pity for a time. I think I've earned that, so if I seem resistant to cheering, leave me be.

Depression is a common side-effect of chronic pain. Think about it for a second, it makes complete sense; you'd be depressed too, if you were stuck in a body that didn't work properly and constantly overloaded your senses with painful stimuli. But please, don't mistake stress or depression as the cause of my problems; my doctors and I have already explored that possibility ad nauseam. It's not about not trying hard enough, it's not because I'm unhappy, and my pain is not psychosomatic. I don't know why I have this pain, but I do know it's not something I can just cheer myself out of. I've tried. A lot.

I know I seem unreliable. I am unreliable. Even to myself. I can't count on my body to be able to do things when I want or need to, and that translates to you not being able to count on me. I'm sorry; I don't want it to be like that, and I try really hard to ignore my limitations whenever I can. I don't want to be flaky. I make commitments because I really want to be able to keep them, and I frequently disappoint myself when I can't. If you think my behavior is frustrating, try being me. It's so much worse from the inside. I'm not offering this as an excuse, I just want you to know that I hate it, too.

Please try not to get discouraged when I have to cancel a previous commitment at the last second; believe me, I want to go more than you can imagine, and there have been many times I've gone knowing full well I shouldn't. Instead, I would really appreciate it if you would try to work with me to find a compromise that gets me out and in your company, but still doesn't force me to spend that time completely miserable. If it's something that can be rescheduled, let's do that! If it can't be rescheduled, perhaps I just need to know that I can get a ride to a safe and quiet place if I need one, judgment-free. Maybe all I need is a place I can retreat and recuperate while I'm there, where I know I will be left alone. If I still say no, please don't take it personally. If you want to be angry, please don't be angry with me, be angry at my pain; it showed up unbidden, I did not ask for it. You can hate my pain -I certainly do. You can hate it, you can be angry with it, you can want to stab it in the face and rip off it's gonads, but remember; my pain is not ME, I am not my pain. I'm still the same me, stuck inside a failing body, and it's not my fault. I wouldn't have chosen this, so please, I beg you, remember that.

If I tell you I can't do something, and I've still said no after you've offered to reschedule or accommodate me, it might be because it's an activity that makes my condition worse. There are many days when I can't bring myself to interact with people, because I have a short fuse and a lot of pain. There are many days when getting out of bed isn't an option, even though I look fine from where you are. Getting out, getting my mind off my troubles, these things don't make me feel better, and sometimes they make me feel worse. I know it's hard to understand, but I've lived with this pain long enough to know which activities I can or cannot do at certain times. Sometimes I do them anyway, because losing out on my life really sucks, but that doesn't mean I'm always up for putting myself through that. When you do too much activity, you might get sore muscles, or be tired from exertion. When I do too much activity, it can really aggravate my pain. Increasing my heart rate sometimes makes my head pound, including a slow climb of a flight of stairs, an activity you probably take completely for granted. I usually know what type of pain I have on a given day, and what helps or makes it worse.

I can't predict from day to day how I will feel. Usually I have a good idea on the minute-to-minute, but pain can rear it's head any time, any place, with no warning. The intensity also varies considerably, and although I might be able to do something one day, that doesn't mean I'll be able to do it today. Just because I did something earlier in the day doesn't mean I can right now. Saying something like "but you did it before" or "you do -something similar- all the time!" hurts me. I wouldn't say no if I could do it. Some activities make my pain considerably worse, even if it doesn't start right away. I might be good for a hike, but hurt for a week afterwards. I might go to a bar for an hour, and have a headache for 2 days because of the noise. Delayed pain is part of my life, and sometimes, doing something I really want to do means I can't do anything else for a while.

Many people with chronic pain experience variations in the quality and location of pain. I know quality of pain seems like a ridiculous concept, but the truth is, our pain isn't just pain. Many of us don't know what kind of pain we will have from one day to the next; shooting, burning, aching, throbbing. We don't always know where we will find our pain from one day to the next. If we've been afflicted long enough, we know how to identify the types of pain we experience, what causes them, and what relieves them, if anything. We've learned to identify our symptoms so that we can cope with them. Sometimes the explanations for behavior will include symptoms you've never heard of before from the sufferer; this doesn't mean it's not true. Just keep in mind that we are completely unpredictable, even to ourselves. We don't know how this is going to play out any more than you do, but we need to be taken seriously. We don't have great words to describe this experience, so we do the best we can with limited vocabulary.

So all that said, I'd like to ask you a favor; rather than ask me if I -want- to do something (I desperately do want to, honestly), ask me if I am able. Even if I look totally fine, please ask if I'm able. I would happily field that question a million times when I feel perfectly OK, just to make sure you also ask it when I'm not feeling well. I know you can't really tell when I'm hurting, so don't worry about offending me -In fact, I've been working for years on not showing my pain to the public; that you can't usually tell means I've succeeded in looking normal. The reason I want you to ask is that, if you ask every time, instead of saying “let's go do ---”, I get to actually say yes, I am able to do that today. If you don't ask if I'm able, but only if I'm interested, saying no means I don't -want- to do things with you, which is not at all the case. I hate saying no to activities, I just don't get enough opportunity to say yes. Help me say yes to you; I promise it will make us both feel better.

I want to spend time with the people I care about, just like you do, and I get lonely, too. I get lonely when my pain keeps me home, and everyone else is out having a good time. I put on a brave face, sometimes, and deal with my condition, just to be around you. I may appear to come and go, I might lose track of conversation, and I might not have much to say, but that doesn't mean I don't appreciate your company, and it certainly doesn't mean I don't want to listen. Because of my limitations, I don't have an expansive social circle, but I deeply value everyone I've chosen to share my life with, and I miss you when my condition keeps me from being in contact.

Having limitations doesn't necessarily mean that I can't do anything at all, and I really take pride in the things that I can still do without help. Certainly, it might take more time for me to do things, and I might have issues finding motivation sometimes, but I am very proud that I can still take care of some things myself. I appreciate you asking me if I would like help, but please do not simply do things for me if I have mentioned wanting to do them. I select projects for myself based on my own capabilities, and doing them for me denies me that satisfaction. If you would like to help, ask me what you can do, I'd usually be glad to have the help. I may say no, and that's OK, too, it just means I'd rather do it myself, because I have it all planned out already.

Please understand that being happy doesn't mean I'm healthy or pain-free. I work very hard to keep myself happy despite my condition, even when it's at it's worst. I smile and laugh even when I'm in agony. When you get sick, or hurt yourself, it might be all you can think about, and you might feel miserable. I've felt like this for so long that I just can't be down about it all the time. If I seem happy, I am. Please remember that these two facets of my life are not connected anymore. Pain is my constant companion, but that doesn't mean it gets to decide how I live my life. I ask that you not assume that being in good spirits means I feel fine. It doesn't, I still hurt, even when I'm in a good mood.

I know that you want to help me feel better, but please don't suggest a treatment or cure to me, unless you already know what I've tried. I know you mean well, and I do so want to recover, but I hear about "cures" and pain relief techniques all the time from other people who also want to help me feel better. Not only that, but I spend a considerable amount of time researching my conditions, looking for anything that has promise of helping. If you've heard of it, I probably have, too, and chances are, I've also tried it. I'm desperate for relief. There is a huge network, both on and offline, of people just like me, with conditions just like mine, and we share our treatment information with others. If that "cure" you saw on Facebook, yahoo answers, or some blog was really a cure, we would know about it by now.

Some of the suggestions I've gotten from people have actually made my pain worse; some of the medications I've been recommended have caused side effects that threaten my quality of life; some of the treatments I've learned about seem promising, but they aren't covered by insurance. These factors all lead to my condition being worse, not better. Obviously, if you've come across some new research about my conditions, and you think I may not have seen it, by all means, pass it on to me, just please don't get my hopes up with an overly-optimistic title for your message. Cure is a very strong word, and my conditions currently don't have one, despite oodles of research into the mechanisms. "Cure" gets my hopes up, and the letdown is really harsh. My doctors and I have a treatment plan, but I may talk to them about what you share with me, just the way I talk to them about research I find on my own.

Please don't ask me how I'm feeling, unless you really want to know. If I miss a commitment one day, don't ask me the next if I'm feeling better, because the answer is always going to be “no”. That's just how it works for me. Even if I feel better, I still hurt, and I don't like lying to you so that you don't feel sorry for me. I know it's hard for you not to ask, and I appreciate that you care enough to want to know, but it just puts us both in an uncomfortable position, and I'd like to avoid that. Just know that if I'm there, I'm well enough, and leave it at that.

I want you to know that I'm not distant because I want to be; a lot of times, I can feel the cognitive changes that take place when my pain sets in. I can feel my brain slow down. I can feel my motor control deteriorate. I can feel my distance, and I hate it. I forget things, even mid-conversation, I lose words, whole segments of what was just discussed, and I even, frequently, experience a delayed self-awareness (as in, I don't always realize what I've done or said until after it's been done or said). This whole thing is really scary for me, so sometimes I just keep quiet and listen. This is especially true when there is a lot of input to keep track of, such as with a large number of people. My pain slows down my processing of what's going on around me, often to the point where I couldn't contribute if I wanted to.

I also want you to know that I don't distance myself physically because I want to. I frequently spend half or more of the day alone, just so that I can get things done. I forget what I'm doing halfway through a task, or something distracts me, and whatever I was doing vanishes from my consciousness. If I've chosen to be alone, please just leave me alone. Please don't pop your head in to ask if I need anything, or want anything, or want to do anything. I know you mean well, I really do, but it's aggravating, sometimes quite startling, and frequently makes me lose track. Please rest assured that if I need anything, I will ask. If I spend 12 hours holed up by myself, it's because that's what I need to do. I may seem fine when you come to check on me, I may even be reading or playing a game, but I'm not fine, or I wouldn't be alone. When my pain is bad, I can deal with solo activities like movies, books, or games, because I can put them down when I need a break or start to hurt too much; doing these activities does not mean I'm fine. I would never get to do anything if that was the case. Having to explain my actions all the time is -humiliating-. I don't want to have to defend my coping strategies, so please don't make me.

I don't distance myself physically because I'm a china doll, but sometimes I do get sensitive to touch, just like I get sensitive to light, sound, motion, and smells. If you'd like a hug, or think I would, just ask, or do the arms-out thing, and just don't be too terribly offended if I don't accept it, or say no. I may go through spans where I'm not terribly interested in much physical contact with anyone, and that may be because of my mood, my pain, or any number of other factors, and that's just part of who I am. It has nothing to do with a desire to be loved or appreciated, it has nothing to do with my love or appreciation for you, it's just how I am.

If I don't get anything productive accomplished, such is life. Have you ever looked at a sink full of dirty dishes, knowing they need to be done, and just cried because you couldn't get yourself do it? I have, both due to pain and to depression on bad days, and it sucks. I'm not trying to be lazy, and I'm not trying to have no responsibility, there are just days, even times of day, when getting anything accomplished is pure fantasy. I feel guilty as hell about this, because I have all of my appendages and I'm not paralyzed; there's no outward reason to be unproductive. I'm trying to accept that I can't do everything I think I should, at least not on a schedule, but it's really hard to avoid feeling guilty. Just know that I do what I can, when I can; not being able to do things when others want them done drives me to do things when I have the ability.

I know this is a rough situation, and I know I'm asking you for a lot, but I count on the people in my life who are able, and I do my best to reciprocate any way I can. It's far from ideal, but this is the best I can do, even though I want to do so much more. I appreciate everything you do for me, even when I find it upsetting, because I know you can't possibly understand what I need if I don't tell you.

Thank you for taking the time to read this. I appreciate it more than you know. I hope this will help resolve some of the issues we may have, and strengthen our relationship even if we have no issues.

--------------------------A note on use of this letter--------------------------

If you would like to reproduce this letter in a publicly available location (facebook, your blog or website, forums, etc.), please do not alter it in any way, and acknowledge the source (I cope, therefore I am) with a link. I spent a lot of time writing this out and editing it for people like me who just need to share through writing, and the content of it was specifically selected to be some of the harder things to discuss honestly and bluntly with loved ones. I know my views may not be entirely applicable to everyone's situation, however as a base for those people who need it, the difficult topics are intended as an edit-able starting point.

If you would like to adapt this letter for personal use, without the intention of posting anywhere public, feel free to do so without acknowledgment. I want this document to help make life better for someone out there who, like me, just can't say the things that need to be said to have a good life.