I suffer from a disease that you cannot see, a disease that there is no cure for and that keeps the medical community baffled at how to beat this demon who’s attacks are relentless. Pan ulcerative colitis. My pain works silently, stealing my joy and replacing it with tears. On the outside you wont see my scars as you would a person who has had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer, however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand.
My sleep, is restless and I wake often because of the pain in my arms, my knees, my neck, my back. My heart. I walk through many of my days in a daze with the pain-fog laughing at me as I struggle to do things I could do without a thought a year ago.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk with the dogs, the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up.
When you’ve had the flu, you probably felt miserable with it, unable to move, body aches, tired and taking every cure you can to feel better again. You’re the lucky ones. That is how I will be feeling for the rest of my days. I try not to be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please don’t get angry at my seemingly lack of interest in doing things, I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to do a shit load of things, while the next day I’ll have trouble getting up to the next room, . Please don’t say , Oh, come on, it can’t be that bad, It is. In a similar vein, It may seem like I’m always putting off visiting, popping round for a coffee, or cancelling at the last minute. If this happens, please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, like I used to, don’t you know that I would! 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. 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?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these 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. Chronic pain does not forgive, nor does it wait for anyone.
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. If there were 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.
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. 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. Almost 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.
In many ways I depend on you – people who are not sick. I need you to visit me, I need you help me with the shopping sometimes, the cooking. I may need you to come to the doctor, or hospital appointments, You are my link to the normalcy of life I once had. You can help me to keep in touch with the parts of life that I miss.
You can help me not feel so lonely and isolated, you can help just by being there.