Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Emotional Health, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Truth Be Told

We teach children to tell the truth.  We take an oath to tell the truth when we get on the witness stand.  When we watch Superman, we hear “Truth, Justice, and the American Way”.  We’re caught up in the premise of truth and yet when we go to the doctor, we often hold back telling the truth.

Let me be clear, omission of facts (data) is not living your truth.  Minimization dilutes truth!  Trying to be or act the way our provider expects us to be/do diminishes our truth.

This is what I’ve learned after being a patient advocate for over twenty years.  If you don’t tell the truth, the raw, nitty gritty details, your healthcare provider is working with insufficient data.  If you don’t give your provider all the information, it’s like leaving ingredients out of a recipe…what a disaster.

Truth is a two-way street. If you aren’t honest with yourself, how can you be honest with your provider?  If you’re having a flare, don’t just believe it’s a passing thing and doesn’t need attention.  If you’re in pain, don’t dumb down the number on the 1-10 scale so the provider thinks you’re brave and can handle the pain with minimal intervention.  The opioid crisis is predicated on a lack of truth, making providers hesitant to prescribe narcotics for pain.

Truth is a funny thing because many believe it works on a sliding scale.  I want you to ponder the idea of truth on a sliding scale when it comes to your health and well-being.  I’ll give you an example.

One of the times I went to therapy, I was seeing a Jungian analyst.  He was a highly competent psychologist and I liked him a lot.  I trusted him.  After eighteen months of seeing him I walked into my session and initiated termination because I felt “healed”.  He was persistent in asking me if I truly believed what I was saying.  I’m stubborn!  I left therapy, telling myself I was healed.  Nine months later I was driving and pulled into a gas station to use a pay phone (I’m dating myself) and called him.  He answered, the first words out of my mouth were, “I need an appointment, I’m crazy” (not in the clinical sense, in my personal experience of how my life was going.)

I learned a lot about truth telling from that experience.  I learned that telling the truth didn’t diminish my worthiness or my life in my therapist’s opinion.  By telling my truth, I healed more quickly.  Best outcome was I felt lighter walking in my own shoes.

I encourage the patients I advocate for to be honest with their providers.  There’s a caveat here, sometimes patients feel they are telling the truth because they don’t remember/recall the complaints they’ve had between appointments.  It’s interesting that we believe an episode or experience isn’t important to tell the provider.  Every aspect of your health experience is important to the provider.

What’s the first truth you’ll tell?

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Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

When the Rules of the Game Change

I’ve been involved in the lives of those with chronic and other life-altering illness for over twenty years.  During that time I’ve become a pretty good observer of people as they go through the illness process. 

Yesterday I was watching one of my co-workers who within the last year was diagnosed with cancer.  The cancer is in his spine and the doctor’s have told him they can treat it like a chronic illness, but they won’t be able to put the cancer into remission.  When I was watching him at work I asked him if he was okay because his stride was different, and he had a slight edge in his face.   I asked him if he was in pain and the answer was a definite, YES!!

We began discussing pain medications and patches and they don’t seem to be taking enough of the pain away.  He’s in a job where he’s on his feet 10+ hours a day and is walking back and forth across a 60,000 sq ft. store.  Finally he turns to me and says, “Maybe I should just go out on permanent disability”. 

I stopped and asked what was holding him back and there wasn’t an answer.  I knew the answer and I bet you know the answer as well (as did he).  If he goes out on disability the rules of the game change.  The relationship he has with his body and the cancer change because the committee in his head is saying that the cancer is winning.

I’ve discussed many times that not everyone will live till their 120, nor will everyone get well, although they may get better.  Illness progression does mean that adaptability has to be your middle name.  However, if the rules of the game change learn the rules and play the game to the best of your ability.

My immediate thought was for him to go out on disability, ease the tension in his body, mind, and spirit and hopefully that would allow the pain medication to work better.  If that weren’t the case he could ask the doctors to increase the pain medication levels; the side effects may increase, but the pain would be eased.  The hope is that somehow he can increase his quality of life.  I know he loves his work, but it may be time to love himself more.  It may be time to focus on relationships and hobbies, and enjoy whatever days he has without pain.

The game will change, we just have to learn to live in the gray zone and figure out a way to learn the new game quickly and become a master at the new game.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Responding to the Call

We’re all called by something.  When diagnosed with a chronic or life-threatening illness it’s your health that is sounding the call.  I’m amazed how many people go through the motions when answering the call thinking they are doing all they can to get well.  The truth is that a half-hearted attempt isn’t going to suffice.  You have to put everything you have behind your beliefs and turn them to actions.

I heard a radio ad today that shocked me.  It isn’t often that illnesses or life circumstances related to health advertise on the radio, but lo and behold the voice of those facing chronic and/or debilitating pain has a radio commercial.  The last line of the ad says, “Speak Up…Speak Out…Take Action”.  It’s clear and to the point.  Is there any part of that phrase that you can argue with?  Do you think this phrase only pertains to those facing pain issues?  Don’t be ridiculous, every patient should consider these three steps as part of their treatment regimen.

When you  respond to the call, in this case “Speak Up…Speak Out…Take Action” you are activating parts of your physical, emotional, and spiritual being that may have been napping for a very long time.  It’s this motto, slogan, or challenge that will provide you with a road map to making the great shift; moving from a passive stance as a patient to an active patient.

This ad was heard on NPR following an interview on “Talk of the Nation” shedding light on the issues related to individuals who are intellectually challenged.  One caller whose son has Cerebral Palsy shared how that when people stare at her son she engages them in conversation.  She will ask them if they have questions.  Her idea is to engage in a way that she’s speaking out by encouraging others to voice their unease and lack of understanding. 

Don’t you think the same is true when you see a woman in a store wearing a baseball cap or scarf clearly with no hair beneath?  How can they speak up/speak out/take action?  It doesn’t have to be out for the whole world to hear, but something very private, but it needs to happen.  You need to respond to the call with your biggest voice possible.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Pain is All Consuming

Ever see the television commercial for depression?  It talks about how depression doesn’t just impact the person emotionally, but physically, socially and although not spoken, spiritually.  It is all consuming, and that’s one type of pain.  What about the pain that is associated with illness, wouldn’t that be all consuming?

Let’s face it, pain is an unwelcome intruder.  It isn’t invited, it isn’t asked to stay, in fact we do all we can to rid ourselves of pain.  The problem is that eradicating pain and still being functional don’t always go hand-in-hand.  It’s important to understand your pain.  When are you most impacted and how long does it last?  As a college student I began the long and painful relationship with arthritis, specifically in my feet.  Walking was unbearable and the medications didn’t always work.  Over time I had to understand and plan my days around the pain until I could find more definitive treatment options that would alleviate the pain.

Pain from illness is not like twisting your ankle during a basketball game.  You can’t just walk it off and expect everything to be okay.  It’s important to find strategies, treatment, providers who truly understand pain.  If you’re looking for a provider ask them specific questions about their experience with pain, and not simple pain, but complicated or chronic pain.  Don’t expect all doctors to be experienced with anything other than “normal” pain.  It’s important to find a pain management program or a palliative care physician whose knowledge of pain goes beyond the basics.

If you are visiting an allied health practitioner the same holds true.  Don’t assume that because someone has a practice that they understand how to handle pain. As we mentioned above pain is multi-dimensional and unless the provider understands all the ramifications of your pain experience you’ll get more of the same and the pain will go on.

Don’t make excuses for your pain.  It’s one of the most personal experiences those with illness will encounter.  It impacts our physical being and alters our way of interacting with the world.  Many facing ongoing pain retreat because it’s the only way to insulate themselves.  It distorts how we see the world.  Networking with others who experience extreme or prolonged pain may help you find the necessary resources.  Trust me, this is far beyond “take two aspirin and call me in the morning”.

How do you deal with pain?  How does it impact your daily life?  What have you found to alleviate your struggle with pain?  How have you changed your relationship to pain?