A patient’s voice is not that different than the voice of those that are not labelled patients. Patients experience life and feel the similar spectrum of emotions as “normal” people.
Patients feel the same way as others, we think like others, we do like others. Perhaps we may experience life a bit more vividly, a bit more meaningfully since we may have had to confront the notion of our mortality as opposed to facing the scrutiny of a performance review. Being a patient may develop your skills in being resourceful, in advocating, in realizing what is truly important in life, in becoming more empathetic.
When you, you who is not labeled as a patient, talk you talk of many things. When patients speak, we may speak more often about struggling. Some talk about it in the past tense, in the form of a victory, a hurdle overcome, a glad I have that behind me and often that patient simply moves on and puts the past behind them and focuses back on living a “normal” life.
Other patients may speak about struggles in the present tense. The condition may be cured or treated but life just isn’t the same anymore. It’s just not as easy. That can be a result of the side effects of treatment, trauma, stigma and being taken out of the system and then trying to fit back in.
Doctors can diagnose, drugs can treat, hospitals can repair, but it’s support, care and the other elements of a healthy life that does the true healing.
I have the medications that alleviate my condition but I don’t have the support, or the “system” doesn’t support me in moving forward to get on with my life. I am stuck.
I am fine, thanks for asking, but I am not better.
I am alive, I survived, I did not thrive.
There is more to healthcare than drugs, clinicians, hospitals and diapers.
Here’s a video that might help explain the connections of what healthcare is really about and perhaps we can create a healthier society by investing where we get the greatest gains in health outcomes and improving the quality of our lives.
A Patient Voice 
Hi Harlon
Did you have success with reblogging. The first time you do something different, it can feel different the first time. It’s less difficult than adding your photo.
I’m working on introduction letter.
M
LikeLiked by 1 person
Hi Harlon
My email is crashed. The instructions are written out but can’t be delivered. I’m ready to scream. Go to the front page of a posting you’ve already posted. Scroll down until you get to Reblog and Like button area. Click on Reblog, chose Survivors as your chose and click reblog. It should be that simple, if were lucky today.
Let me know via link on WP since I won’t receive receive email. Talk to you soon. You can also contact Chris, Surviving the Spectator Gavin, Sedge808 knows the system better than I.
We’ll get it done.
LikeLike
The fact that you are writing about this is a start. You are clarifying what you need. Then next step is how to get it. I’m not sure if the system is capable of giving you the support you need. It might be, and you can continue to clarify specifically the kind of support you need from the system, but I wonder if you might also be part of creating it. I know you have potential in you. I bet there are people who feel as you do. Maybe you can organize, even on a small scale. Is there already a support group you could go to, or is it possible to start one? I know this won’t fix everything (or anything quickly) but if there is a group with a positive focus it could help. Best wishes and prayers for healing coming your way, Harlon.
LikeLiked by 1 person
Thanks JoAnna for a fabulous comment. I think support is the key word. I don’t feel I am necessarily a leader or for that matter have the skills to facilitate a support group, but fortunately living near a huge metropolis (Toronto) there are opportunities for support. I recently completed a group on Loving Kindness & Mindfulness Meditation and am currently part of a Narrative Group. They have both been incredibly powerful for me. They aren’t support group per se, but they both assemble people with similar struggles and by sharing our meditative experiences or are stories, we learn from each other, how we process and how we cope. They have both played huge roles in expanding my capacity to heal and to move forward. I think that many of my last posts may have been a bit dark, but that has been part of my process, writing about it, sharing and then letting it go so although it seems I am struggling, I feel I am also moving forward. I am grateful for your insight and compassion. Hugs, Harlon
LikeLiked by 1 person
Thanks for letting me know how you’re doing overall. I’m glad to hear you’re involved with people who can be supportive and encouraging. Write on, my friend! Hugs 🙂
LikeLiked by 1 person
Hi Harlon
Very helpful post, I can relate and now moving to my health is much worse. I have medicine like you but 24/7 in bed, that’s for starts. I choking down what I can control and what I can’t. I’m at the scary part.
Thanks for sharing your experience.
M
LikeLiked by 1 person
Dearest Melinda, I’ve had my versions of the scary part, so perhaps I can empathize with where you may be at. I hope you have the support, care and compassion to help you stomach all that you can control and all that you can’t. I genuinely care about you and if I can support you virtually in any way, please don’t hesitate to reach out. Thank you for your honesty and your courage. Love, Harlon
LikeLike
We are seeing as we age how we are at different phases of being a patient and learning patience through it.
LikeLiked by 1 person
Reblogged this on Espiritu en Fuego/A Fiery Spirit and commented:
Filling in the missing parts for a Healthy Life. If one is missing then no matter what you do you might survive but not be able to thrive. Common Sense.
LikeLiked by 1 person
Just a thought, what you’ve been through is a part of your life, your story. Perhaps if you were to tell the story in increments on your blog you could build the support, care, and compassion you need to thrive for it is often in sharing our stories that the possibility of healing comes. Blessings, N 🙂 ❤
LikeLiked by 3 people
Thanks Natalie, and I think that’s a great observation. I feel that my writing, as of late, has been about struggles – I tend to write about them as they pop into my mind, but building a narrative that is chronological would be more helpful in sharing my evolution and as you wisely said, build the support, care and compassion in a more sensible and relevant fashion. Peace, Harlon
LikeLiked by 1 person
You’re welcome! Blessings and peace 😊❤️
LikeLiked by 1 person
So true…this makes me sad though, and frustrated.
LikeLiked by 1 person
Touché! Cher Harlon, nous avons tant des choses en commun, ta réflexion enrichit la mienne. Bonne année à toi, je souhaite qu’on se retrouve en 2017!
LikeLiked by 1 person
Many good points in your post and the video. Clearly, we need to address health from a more integrative and caring way. I believe one root problem is our economic system that puts the focus on earning a living to have a life. I hope you find and create the support you need for your health and well-being Harlon.
LikeLiked by 3 people
Thank you, and I must say that the writing process and sharing is a very effective way in finding and creating the support I need. So thank you for your role in my well-being. Peace, Harlon
LikeLiked by 1 person
I’m happy to be part of your well-being. blessings to you and yours
LikeLiked by 1 person
So true.
LikeLiked by 1 person
Looking for Trump’s Care… Best wishes !
LikeLiked by 1 person
You have a system of sorts with us wp readers Harlon! Stay strong. We urge you on and in lil red dot, I spent time de-stigmatizing mental illness. Together with my team we organised outings for patients and 24hr clinics for walk in. Pity at your end the nurture part is missing. More can be done I hope.😊Garfield hugs!
LikeLiked by 4 people
Very well written. So true. Support is so important. People don’t “see” each other anymore. People are not aware of each others’ needs anymore. Sense of community is what’s needed. None judgmental interaction
LikeLiked by 2 people
Your ‘Doctors can diagnose…….’ paragraph is key. Nurturing on all levels, as you rightly say, is key
LikeLiked by 3 people