Introduction To: Inside Incurable Lives


We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.  Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.  This is the true “Opioid Crisis”.  But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.  She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.  She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,  came out in September 2017.  In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”  The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode  2  finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”  She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities.  She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey.   She also wants to do whatever she can so people learn about her feature documentary. 

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.  I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”  She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.  Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”  My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.  Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.  But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.  Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.  I think that it taught her and hopefully will teach others about “Invisible Illnesses”.  She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.  She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.  If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.  I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.  It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable

The Happy Challenge


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 http://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.