The Challenge of Being a Patient.

Life is not the same when you suffer from a medical condition. Everything changes, for instance you may require more time to complete a simple task that would initially take seconds. Similarly, getting used to the challenges that were not apparent, when the symptoms were developed, and then adjusting to an altered lifestyle can be very hard. 

As a chronic patient I understand how challenges and opportunities become a part of everyday life. However, this is due to me spending many years with a future looking so dark; full of obstacles, emotions and failing attempts to communicate.

How would I ask for help without the constant thought of being a complete burden to my loved ones? Arrangements would often have to change or be cancelled because of my continual symptom’s taking over my social life and agenda… I was becoming a person with broken dreams and very little energy for life.

Seems very catastrophic, doesn’t it? It’s something that is very difficult to accept, yet seems to be a very frequent state of mind.

The Big Obstacles


fear, limitsFear:
  This natural emotion had two fundamental and basic functions. Firstly, providing an alert about real-life risks. This is a constant thought due to us unknowingly making the best and important decisions to save our lives.  The most important and functional – Provide and alert about a real-life risk- with this signal on countless occasions through our life we have taken the best decisions and saved our life. The second function is when you receive bad news, or are under so much pressure that you’re petrified. It’s hard to move, think or even feel in a positive way. Surprisingly this has a name, ‘Fight or Fly’ – when referring to the stress reactions in your body.

Keeping the issues personal:  The decision to stay silent without communicating; believing that what happens to us just concerns to us. Believing that being alone is the best solution or going through something very difficult causing unprecedented emotions and a lump in the throat… this feeling can only lead to more physical difficulties, emotionally, not just involving yourself, but your loved ones too.

Close your eyes and believe everything will go away: Close your eyes and believe that everything will go away: A craving of belief that nothing will happen. The idea in your head that if you just leave it, it will just go away, magically. However, by not getting properly informed you’re avoiding an unescapable reality.

 

Negative thoughts:  Those that trap you, entangle you and lead you to negative emotions like anxiety, stress, hopelessness and guilt. They consume a lot of our energy and attention, it is very easy to fall into them and by staying in these thoughts we can have a real or imaginary painful experience.

 The truth is that also, although there are some barriers there are also great aids:

child and nursweCommunity:  Human beings are social beings by nature, we live in society from the moment we are born. Our social circles have a certain measure and way of communicating and sharing. If we are part of society then we belong to a community, regardless of whether it is small or large, frequent or not, close or not. Our needs also lead us to share new forms of emotion, language and thought. Being a person with a special health condition also opens the possibility to recognize new ways of belonging to a community and then feel identified, supported, understood.

Family and friends are generally the closest circles, it is true that sometimes even there it is difficult to communicate or feel  complete with an understanding about our needs, however it is important to look at ourselves and understand if any of our enemies, like fear, keeping silent unnecessary or not wanting to face what happens to us, is what hinders the circles to support our needs in the most functional and positive way.

Space for breathing, silence and reflection:  We live in a world full of noise, emotions, thoughts, tiredness, daily tasks, pain and worries, that’s enough to keep us away from ourselves and not connect with the most essential thing; our own being. Silence, that special act that allows you to place yourself in a protective bubble. It is an extremely special ally since this is where the mind can lower your body’s rhyme and pace and from there provide rest, relief, opportunity to make decisions and recovery. Simply observing our breathing allows us to breathe deeper, with proper rhythm, bringing essential oxygen throughout the body and providing instant relief. Keeping silence and breathing deeply is so that we also have the possibility to reflect. We need to let our mind lead us to a clear analysis of what’s happening. A realization of the type of emotions that accompany us and then also provide the possibility of best decision making.

Information:  We are surrounded by information. Through multiple channels we have access to what we are looking for. When we live with a special health condition that affects our lifestyle we can use many technological tools to inform us by reliable sources about what is important to know.  Having the possibility to inform the people who become our support systems what happens to us, what we need and what is important to decide about our future?

self compassionSelf-compassion and positive thinking:  Recognizing ourselves that we are doing the best we can every day is a way of caring lovingly. Looking at ourselves without judgment and being self-compassionate is calming for our soul and heart. Positive thinking plays a fundamental role because it is powerful and acts on our quality of life as it impacts on the way we see and interact with ourselves and the world. To think positive is to look objectively, hopefully with the confidence of knowing that we will go step by step while offering the possibility of finding the best tools to live in the best possible way. This attitude and thought also open the possibility to receive external support, to feel supported, understood. Facing reality with the personal skills we already have making them work for our own good and that of others. Having a health condition can be the best system to find new ways to communicate with the world, find solutions, empower ourselves, transform the society around us and why not improve our health and quality of life?

 

A Ray of light

Currently there are multiple ways of having face-to-face or virtual supports, this facilitates the forms of communication and understanding of our reality as patients. Communities are great support systems and in them we can deposit our doubts, concerns, needs, contributions, and our transformation that benefits others.

If you are someone who has just been informed about the new condition of being ostomy patient or for some time, already has been different modalities where you can find support by others sharing the same condition, experts in the medical field care and attention, as well as simply possibility to share life, its challenges and great joys.

Some places where you can go and contact others like you are:

Discussion groups https://www.uoaa.org/forum/index.php

Friends Ostomates Worldwide: https://www.fowusa.org/

Buddy Programs in Hospitals where you can contact patients who already have a process of time and progress in their condition which allows them to accompany other patients in the same situation. It is important that you ask your doctor or nurse about this possibility so you would be accompanied in this life experience

11 Health Senior Patient Engagement Officer Keagan Lynngard-Hysell who will be happy to make contact and accompany you in this process as she is also an ileostomy patient truly advocate on helping and accompanying others in their same life situation.

For 11 Health, you are very important and that is why we take care of developing different solutions that allow to support your needs, come with us and we will be glad to be there to accompany you on the way of living with an ostomy. Together we can do it!

 

Sources:

Eaton, R.J., Bradley, G., Morrisey, S (2013) Positive predispositions, quality of life and chronic illness: Psychology, Health and Medicine, 4, 19, 473-489.

Kristofferzon, M., Lindqvist, R., Nilsson, A. (2010) Relationship between coping, coping resources and quality of life in patients with chronic illness: a pilot study: Scandinavian Journal of Caring Sciences, 476-483.

Zhao, J., Abrahamson, K., Anderson, J., Ha, S., Widdows, R. (2013) Trust, empathy, social identity, and contribution of knowledge within patient online communities: Behavior and Information Technology, 10, 32, 1041-1048.

In our continuing series of patient stories, we would like to introduce you to Joshua L, diagnosed with Crohn’s Disease at age 23.

Dear 11 health
My name is Joshua L. and Crohn’s Disease has welcomed me with open arms.

Here is my story. I was diagnosed with Crohn’s at the age of 23. I can remember the moment. I went to use the restroom and I was in pain like nothing I had ever felt before. The countless colonoscopies, 14 different medications tried, blood work nothing could get my symptoms under control. I can remember the utter panic of simply having to know where a restroom was no matter where I was and wondering whether I would make it in time. I thought this was how simply life was going to be and I had come to terms with that.

Now, 15 years later I began multiple surgeries in hopes of having a better quality of life. From 2011-2014 I’ve had my colon, rectum and rectal stump removed and have an ileostomy. During the last surgery when I was having my rectal stump removed I developed an infection at the surgical site. After the infection was cleaned out I had to heal naturally from the inside out. This left an 8 cm deep wound that had to be packed daily by a home health care nurse in order to heal.

A lot of life changing moments of weighing 100 lbs to now a healthy weight of 195 lbs. From the days of being moved to a rehabilitation center for three months after the colon and rectum were removed because I was too weak to go home. To the bouts of dehydration when learning to care for the stoma with hospital stays. Through all of this now my quality of is 1000x improved! Currently, no medication is taken and I can eat whatever I want.

I have a passion to help others who are going through similar experiences that I have gone through. I want to make a difference in other people’s lives. We need to erase the stigma and shame surrounding sometimes how people with ostomies feel. It’s ok to have one after all it saved my life!

Sincerely,
Joshua L

“Healthcare is about human to human interactions.” That was my most retweeted comment at the recent brilliant Stanford Medicine X conference I attended. For me it epitomises everything about my own healthcare journey and the journey of my company 11 Health. The ability to build and maintain a relationship with my medical team under pins every single bit of treatment i go through and every decision I make.

I left for Stanford with a bad cough that didn’t improve on my trip so when i came back I went straight back to my team and had my usual bloods and a chest x-ray done. Thankfully the x-ray was fine and the bloods led to my usual round of intravenous infusions. It was during an iron infusion that I learnt something that has really knocked me for six. I have always believed that having an honest and open relationship with those who treat me is fundamental to my on going recovery. We band around the term ePatients. For me though it is just about being engaged in all that goes on in my health. Let me explain….

Click here to view original web page at beingapatient.blogspot.ca