WHAT THEY DON’T TELL YOU ABOUT LIFE WITH ILLNESS -OCTOBER 12, 2019 -Rhiann Johns

“Patient’ defined as ‘a person receiving or registered to receive medical treatment.’ One that a person only identifies with when sick and in need of medical treatment. 

When diagnosed with a chronic illness, a patient becomes a more permanent part of our identity. An identity that we gave to learn to juggle with many others. A new chapter of our lives, as we learn to wrangle new terminology and to learn to cope with unfamiliar symptoms.

Waiting While Living As A Patient and Learning What It Is To Be Patient

And as we become a patient, we also learn another definition of the word. Another explanation of ‘patient’ describes it as being ‘able to accept or tolerate problems, or suffering without being annoyed.’

Living with a chronic illness involves a lot of waiting and a need for patience.

Because living with a chronic illness involves a significant time of waiting. You learn to wait and to wait with patience. It is a life consisting of waiting for symptoms and side effects to dissipate. It often means waiting for appointments to see doctors and consultants. For only then to spend a numerous amount of time waiting in hospitals for the appointment with the consultant to begin.

Waiting with the hope that the new treatment recommended to us works, waiting to feel better. And waiting for our lives to return to normal, waiting, waiting, waiting.

But when the symptoms don’t disappear; becoming stronger and more persistent, we begin to part ways with hope. As symptoms worsen, becoming a prominent feature in our daily lives, and with it, the glimmer of hope dwindling, the cycle of grief begins once again.

Parting With Hope Of Returning To Our ‘Old Normal’

As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our ‘old’ normal. 

We learn to let go; accepting that we cannot change what is happening to us. Or the future and the inevitable progression of illness and the worsening of symptoms. We can only prepare for what lies ahead but refusing to let go and surrender before the inevitable befall us.

Nothing can prepare you for the destructive force that pain and other symptoms have on every facet of our lives. Illness dripping its poison into every corner of our lives. Nothing or no one can help you anticipate the misery that such symptoms cause, and the days where you want to give up. Unfortunately, there is no such handbook given on the day of a life-changing diagnosis. No such book is giving advice or instructions on how to cope and live with this new world of chronic illness.

No Alternative But To Persevere 

Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere. When diagnosed with a chronic illness, they fail to disclose that persevering becomes a part of daily life along with pain and other disabling symptoms.

Life becomes about persevering through the crippling effects of chronic illness to achieve your goals, despite the difficulty when being in pain all the time.

There are endless moments of continuing through new treatments and the horrible side effects, while not knowing if it will even be successful. And it’s persevering through every horrendous flare and tough periods that chronic illness continually delivers.

Self-Affirmations As A Weapon Against The Difficult Days

After a life-changing diagnosis, there is no one to tell you that to persevere and get through the tough days you begin to rely on self-affirming and motivational statements. 

Bold and uplifting proclamations that say to the world ‘I can do it.’ These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity. A reminder that we had faced tough times before and came through, and we will do so again. They provide strength and reassurance when faced with a crisis, feeling weak and unsure.

It can be hard to find self-worth, loving yourself when chronic illness sweeps in stealing what gives your life purpose. Affirmations remind us that we are not to blame, helping to eliminate feelings of worthlessness that chronic illness can create.

Loving Life Within The Bubble of Pain and Illness

When diagnosed with a chronic illness, nobody informs you that you will begin to hate your life. The constant symptoms, and all of the unknowns that now exists it is hard loving this new predicament. It often leads to dissatisfaction with life, as the losses due to chronic illness increases. Illness brings with it many negatives, and as such makes it difficult to find any positives within it.

Self-acceptance is a daily struggle, as loving others is easy but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are.

To thrive and not merely to survive, finding aspects to love and find satisfaction within life with a chronic illness is essential. To find love for ourselves, we must begin to accept those traits that we do like about ourselves. Yes, there’s no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments – moments to love and cherish despite the misery that chronic illness inflicts in the lives of those affected.

As a person who experiences many moments of adversity, they continuously teach me the meaning of the phrase ‘Tough times don’t last, tough people, do.” 

A lesson that I am thankful I have learnt by living with a chronic illness.

To follow up on this article by RHIANN JOHNS, use the link provided. https://www.brainlesionandme.com/what-they-dont-tell-you-about-life-with-illness/

Rhiann Johns writes: A blog documenting life with a neurological disorder known as FND (Functional Neurological Disorder). Every aspect of my life with neurological symptoms such as weakness in the legs, dizziness and vertigo amongst many others. Join in my journey and learn what it is like to live with a long-term health condition.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s