Living With and Coping With Disease

Daily Life

Living with and coping with disease can be a fact of daily life or perhaps a constant annoyance, an exhausting challenge or possibly an all consuming struggle.  If you or someone you love is dealing with a disease, I wish for you to have strength, endurance and success.

Beyond these things, I have some personal desires for you below:

I DESIRE YOU DO NOT FEEL ISOLATED AND ALONE

Whatever you are dealing with, I hope you do not feel alone.  In many situations, disease does not take time off and give you a chance to take a break.

Furthermore, even when you have the support of family and friends, it can be painfully noticeable that their lives are not overrun with the difficulties and issues you are constantly dealing with.

In treating and coping with disease, I believe that most of us desire and sometimes require the help and support of others.  However, we might still notice that others can live and thrive normally in their everyday lives while we feel trapped in our situation.  Unfortunately, this can lead us to feel isolated and alone.

A diagnosis of cancer, for example, can bring with it many unwelcome feelings and emotions.  In fact, just the diagnosis itself can cause a person to feel set apart, alone and isolated from others.

My desire is that you never feel alone.

I DESIRE YOU DO NOT SHUT OTHERS OUT OF YOUR SITUATION

In some cases, disease may lead people to seek solitude, even when that is not the best option.

How can anyone really understand what I am going though?  I don’t want to be a burden. What’s the point of involving others when they are unable to fix the problem?  I feel set apart with my disease.

If you find yourself seeking solitude with a disease, I would encourage you to let others be there for you, as long as that does not cause a problem.

Letting Others Know How To Help

If your disease is a new development and if possible, please be patient with those who are trying to show support.  They may try to do or say too much, or perhaps do or say the wrong thing, but this is possibly a new and learning experience for them as well.

I dealt with this in trying to help someone I cared about who had cancer.  I found that sometimes I wanted to say or do more than was needed to try to FIX the situation.  This ended up being frustrating for the person I was trying to help.  If you are living with illness or disease, you may have to find ways to let others know when they unintentionally do or say something that you feel is not productive or helpful.

 

For people close to me, sometimes an important and yet a very difficult thing for me to do, has been to just quietly be there; to refrain from trying to say or do too much.

 


I DESIRE THAT YOU DO NOT LOSE HOPE

Even when I write the words, “do not lose hope“, I find myself smiling because I am thinking of someone I have known for a long time.  This person has overcome a lot of obstacles in their life.  Furthermore, even in the midst of challenges and setbacks, they consistently remain one of the most enjoyable people I know to be around.  I look at this person and other people I have known that have endured much, with amazement.

If my life had included some of the difficulties I have seen some people endure, then I can assure you I would not have remained as optimistic as them.  Most likely, I would have grown vehemently pessimistic and emotionally hardened.

Living with, coping with and treating a life-altering or life-threatening disease for an extended time can sometimes make hope a rare commodity; making hope difficult to find and difficult to possess.

A Personal Discovery

After many years and mistakes, I discovered that sometimes I must get creative to find the thing that gives me hope.

For example, this website is a big part of finding hope for me.  I had to find it (writing and creating this website), and then I had to pursue consistently working at something I had never done before.

(By The Way, I’m Still Alive)

In my journey, I’ve had to deal with health problems, complications and even losses.  Among other things, my two known autoimmune diseases have forced me to make unwanted changes to my life and my daily activities.  Moreover, they continuously complicate my decisions and my life in both small and big ways.


A number of years ago, I was hit head-on by another driver on the interstate.  While this is not a disease, it caused some permanent damage to my right ankle and has led to ongoing challenges.

 

A past letter from my orthopedic doctor states that I have “a complex problem with avascular necrosis of the lateral talus and a discreet osteochondral lesion of the talus and of the tibia.”  It is possible that this condition will require surgery with a very lengthy recovery in the future.  Basically, my right ankle hurts a lot and causes ongoing problems.  As a result, there are some things I can no longer physically do without pain or undesirable and possibly serious complications.  Additionally, favoring my right ankle for almost ten years has caused a painful complication with my left knee.

When we are forced to deal with problems, difficulties and losses from a disease or medical condition, it can seem very unfair.

However, I am still alive and while I am alive, I want to be a part of life as much as possible.  Even so, this is something I often struggle with.  Both my parents suffered with and endured disease over more than a few years.  My father died with complications from Parkinson’s and my mother, after several years of treating her lymphoma, ultimately became a casualty of cancer.  I’ve lost others to disease as well.

Acceptance Can Also Be A Battle

I accept that losses cannot always be avoided and I accept that death is a part of being human.  However, when the people I love suffer, it can be heartbreaking.  When they are taken or gone from my life, there’s no way to fill that emptiness, no way to replace them. 

Losing some physical abilities due to the condition with my ankle has been a tough pill to swallow.  Realizing that I must limit myself to prevent pain and undesirable complications is frustrating.

At times, over the years, it’s been both exhaustive and punishing to fight to maintain hope, for undesirable situations I cannot avoid or escape and for loved ones suffering with illness and disease.  However, in 2017, I found that I overwhelmingly needed to do something to try to help me.  What did I do?  You’re reading it.  I feel this is helping.

Life

Life can be much more than living with or coping with disease; more than the challenges we face, more than the hardship or losses we endure.  For me, it was other people reaching out with love and kindness that reminded me and allowed me to see this.
I hope you see this as well.

A VERY BIG WISH

I wish for you to have hope and life that outshines whatever challenges you are facing.

Whatever your situation, I wish that you have or that you will find the things that give you hope.

A.H. Browning

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