This is what it is like to be me….

I have had Rheumatoid Arthritis for 20 years now.  Hard to believe it has been so long,  I don’t like to talk about it and I try hard to hide it from people, sometimes I think I try too hard.  Sometimes it is hard to understand me, even for the people that I am closest to.  I desperately want to be understood with out the all awkwardness that comes with discussing an illness, I need compassion, but not pity.  I am not sure how to achieve this.  I am going to re-post an article I read recently about chronic pain.  It is relevant to me, because whether or not I admit it to you, I am in pain every day of my life.  

1)   Remember that being sick does not mean that the sufferer is no longer a human being. Chronic pain sufferers spend the majority of their day in considerable pain. The chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.
2)   Learn the code. Chronic pain sufferers will often talk differently from people free of constant pain.  Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief, and then think about this happening for the rest of your life! It’s hard to find the words for that sort of pain.
3)  Recognize the difference between “happiness” and “healthy”. When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain for months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.
  • Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain – they are! They are merely coping, sounding happy, and trying to look normal.

4)  Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it.

5)  Understand and respect the chronic pain sufferer’s physical limitations. . With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.  

Insert “sitting”, “walking“, “thinking”, “concentrating”, “being sociable” and so on, to this step, as the curtailment on a sufferer’s ability to be responsive applies to everything that you’d expect a person in good health to be able to do. That’s what chronic pain does to its sufferers.

6)  Leave your “pep talk” at home. Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble walking.  If you want them to do something, then ask if they can, and respect their answer.

Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. 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; not to mention the recovery time, which can be intense. You can’t always read it on their face or in their 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.

7)     Never use throwaway lines. Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it” or worst of all, “But, you don’t look sick”, etc., are lines that might make you feel like you brought up the subject of their illness, but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.

8)  Check your own patience. If you’re impatient and want them to “just get on with it”, you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out  but have neither the strength nor the coping capacity as a result of the pain.

A chronic pain sufferer 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.

Be very understanding if the chronic pain sufferer says they have to sit down, lie down, or go to bed. It probably means that they do have no choice but to do it right now, and it can’t be put off or forgotten just because they happen to be somewhere, or they’re right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.  

9)  Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment.

10) Don’t be put off if the chronic pain sufferer seems touchy. If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard 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, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11)  Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them.  You can be their link to the “normalcy” of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again. 



These tips apply to anyone who deals with pain on a daily basis.  I hope this can help people understand and help open up conversations without awkwardness.

Thanks for reading.

Full article found at

4 thoughts on “This is what it is like to be me….

  1. Thanks for posting this, Mel. My mother in law suffers from critic pain and it helps me understand her also. Sending a hug!!!


  2. Girl you know I understand. While I have zero desire for ANYONE to experience chronic pain, i sometimes wish people innately knew. People try to empathize by telling you about ‘that time I had kidney stones and wanted to die the pain was so bad’. When I hear things like this, I appreciate their efforts to make me feel understood but all I can think is: I’ve had kidney stones, I get it. I also know that in a few days its done. You don’t go to bed knowing that no matter what you’re going to wake up and spend the next day in pain.

    Chronic pain means constant pep talks to get through the most mundane task. It means overanalyzing a trip to the store and all the issues surrounding it. It means overwhelming guilt when you decide to back out of something at the last minute because no matter how important it is, or how much you want to do it there is no way you can function with the pain.

    And even within chronic pain there are subsets. I have no idea the pain you have, I only understand my pain. Finding someone who has had a similar issue gives you a sense of validation even if you’re not looking for it. It’s a way you can connect and someone says ‘I understand you, I know your pain, I know your troubles’

    I’m here for you always and no, I don’t know your pain…but I know mine. Love you girlie, thank you for opening up.


  3. I am glad you posted this. It is a great description of chronic pain. I can’t say that I know what it feels like but I can say I wish I could make it go away. Love you sister.


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