By Suzanne Stewart.
The suffering of the chronic pain patient can be mostly silent, somewhat invisible. People will sometimes ask “where are the bruises, the medical machines or the marks on your body”? Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence. The “silent screams” are more often quiet because we are seen as complaining if we are too vocal. When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at www.butyoudontlooksick.com). There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about. Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.
We may agree to attend an event or a family outing if at all possible. We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer. Sometimes we go, but cannot stay very long; they say we are “phony”. We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us. That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.
Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily. Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share. It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.
If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be. I also don’t admonish others who are not in the same place as me. I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients. Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.
Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly. I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.
I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc. It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me. If I can show one person, a light at the end of the tunnel, then I have given them hope. Someone sent me this private message and it said; “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings? Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day. No drugs, no docs, just PT and pain shrink….”. Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing. But it’s not for nothing. We are not all in the same place at the same time. There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have. I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on. I don’t just “wait for the next day to arrive”. Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”. But that is my choice. I do take a normal dose of Opioid pain medication, of which my life “depends on” now. I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this. I GOT the pleasure of attending a U.S. pain conference this past weekend. I got to do it and got through it, because I am able to take a pill that helps me get through these events. Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain. It’s not for everybody and that’s OK. We are all different, it’s supposed to be that way. I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK. I cannot please everyone and it’s alright. I’m not crying any longer about the message. Instead I feel badly for the person who wrote it. They are in a darker or more sad place than me. I will be there for them if or when they are ready.
It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation.
For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).