What NOT to say...

People who live with and suffer from chronic pain and chronic illnesses often hear different statements. Some are intended to be helpful and kind. Others are meant the opposite way, often it seems (to me anyway) that the people that makes such mean comments are almost trying to protect themselves from an illness or pain by distancing themselves from the sufferer they are speaking to.

Below are some videos about things NOT to say to someone who suffers from a chronic illness and/or chronic pain.


This first video is from a young woman in England. She suffers from a great deal of pain every day as a result of damage to her back. Through her YouTube videos I have gotten to know her a little bit and she is a truly warm and wonderful person. Sara, without even knowing it, helped me a great deal in the past 6 months. I have watched and re-watched her videos, especially the ones where she was still a student in college (University). She is a pharmacist, which is what I had been ready to start college for if my back hadn't blown out a month before school started. Her determination to make it through school and still do her best was very inspiring to me. Being someone who lives with extreme low back and pelvic pain I can totally relate to how much pain she was living with, struggling with, and barely making it through each day with. But SHE DID IT! She graduated! I am so very proud of her for doing that because I know how hard that had to be. Anyway here is a video she posted titled "Things to think twice about before saying out loud to someone with chronic illness" 

This second video is by a young lady who suffers from Interstitial Cystitis (IC). This is an extremely painful disease that affects a large number of people, though most (doctors included) have no clue it even exists, or they have very faulty information. Ir causes severe abdominal pain (much of which is centered around the bladder), severe pain with intercourse, frequent urination, and frequent strong urges to need to go to the bathroom. There are other symptoms as well, but the biggest one is PAIN. Lucky for Amy she had a stimulator placed which has helped her a great deal. She has been able to return to college and is hoping to become a Urologist. 

Please, when you are talking to someone who has a chronic illness and/or chronic pain, please think twice about what you will say. Take a moment to put yourself in their shoes and then say things that will be supportive and helpful rather than dismissive, hurtful, and judgemental. None of us ASKED to be sick or in pain, yet here we are and just doing the best we can day by day.

More Reading and Thoughts

I am continuing to read the book The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. It looks like there is going to be a lot of record taking. Tracking pain levels through the day, as well as graphs for activities and pain level on the same graph (to show correlation between the two), tracking flare ups daily, and weekly, as well as individual write-up for each flare. The idea behind all of this tracking is a good one and I am sure it will help because I agree with the statement that the more I know about my pain and how it affects me, the easier I will recognize areas that I can change to gain better control and less pain. But wow does it look rather overwhelming to just keep all those charts every day, almost a job in and of itself LOL 

I've gotten to the part about setting goals, I am thinking I will set 2 to start with. The first is to help me feel like I'm actually achieving something every day, so I will try to do at least 1 to 2 loads of laundry per day. The second will be to fill out all these charts LOL 

Because my depression and apathy are so deep, and my ability to move around is so low, I am taking the advice from one of the other books regarding pacing from a place a being bedridden. It basically said that I may have to start out with something very small, that someone else may not see as a big deal, but since I've been doing almost nothing for 18 months or so now, it is a big thing. It is important to help re-build the desire to fight again, to get better, especially for those like me who are coming at this from a place of having given up and letting the pain run my mind and my life for so long. This will take a while, one small thing at a time because if I try to change lots of things at once I will set myself up to fail.

Interesting statement I just read. I did some of the exercises that are on the book, on the website for the book. I did one about activities and avoidance of those activities due to pain. There were a couple that have not changed due to my pain. The comment was that even though I am thinking I do nothing, those couple things prove that this is not true, that I am still doing something. When I read that it kind of gave me a little jolt, one of those "duh! Missy!" jolts. I've been so focused on what I haven't done every day, that I ignore what I have done.  

Gosh I feel like I'm having to learn how to live all over again. hmmmm...I guess in some ways that is exactly what I am doing. 

My pain wasn't too good today. We have bad weather this week and stronger weather moving in today, which is what woke me at 4AM. All the muscles in my back and pelvis were tight so I took muscle relaxers and applied the heating pad, which has helped. I also took my meds, which has helped as well. I did some mild stretching that the physical therapists taught me to help release the tension in my back and pelvis muscles, this also helped. I did some breathing and am refusing to let myself think the catastrophic thoughts I usually have running in my head. I'm sitting at a 7, but it is not rising like it normally would be. Instead of just letting it run rampant, I tried doing things to help control it and it is helping. Usually when I wake up this way, by this point (2 hours later) the pain has gone up. But so far, I am controlling it and who knows, if I continue to do that I might actually make it go down and not hit a 10 (pain crisis) when the thunderstorms go through today. Does this mean that I am doing it? I think so!

Today will have to be a rest day with the exception of filling those forms.

My brain is still working over the fear. I will probably do some stream of consciousness writing in my written journal to see what comes out, then hopefully I will be able to post something here in a couple days that talks about more reasonably than stream of consciousness writing allows.

Edited to add at 6:47AM: I just took the test about how my husband's response to my pain issues affects me and possibly our relationship. Finally, a really GOOD score! It asked me to rate by frequency on 0-10 how often he does or says things like "Your pain interferes with my life", "you can't be in as much pain as you say" and similar negative things. It then asked me to rank whether I liked or disliked when he says those things. For the entire list I got to say 0, because he doesn't say those things to me. This doesn't mean that he never talks about being frustrated or concerned, but he never throws it in my face, tries to make me feel guilty, or anything like that. He has been so immensely supportive, understanding, and helpful. We've talked about this many times, and he does express that he occasionally feels a twinge or frustration or similar emotional reactions, but it doesn't go beyond that twinge because he knows this is not my fault and he loves me the way I am.

It felt good to get a good score on something! LOL

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.