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What They Don’t Tell You About Life With Illness

What They Don't Tell You About Life With Illness

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For October, I have used the prompts to write about some of the lessons that chronic illness will show you. Lessons that incidentally nobody will warn you that illness will teach you.

“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.
Photo by Lukas Hartmann from Pexels

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.

"Because living with a chronic illness involves a significant time of waiting. It is a life consisting of waiting for symptoms and side effects to dissipate. We are forever waiting for our lives to return to normal." Click To Tweet

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.

"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." Click To Tweet

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.

"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." Click To Tweet

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.

"Life becomes about persevering through the crippling effects of chronic illness. It's persevering through every horrendous flare and tough periods that chronic illness continually delivers."

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.

"Life becomes about persevering through the crippling effects of chronic illness. And it's persevering through every horrible flare and tough period that chronic illness continually delivers." Click To Tweet

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.

"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." Click To Tweet

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."

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.

"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." Click To Tweet

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.

"Yes, there's no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments." Click To Tweet

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.

  • Caz / InvisiblyMe

    I think I’m a little better with patience these days, but it’s not easy because everything seems to involve waiting and wondering, from getting a rest result to seeing how well a new medication works. But parting with the old us, the way things used to be and the person we were before illness? That’s tough. I think it’s a continual work in progress because those thoughts and feelings can creep up out of nowhere, and it’s a very bitter pill to swallow. You have done a fantastic job with the prompts, Rhiann!
    Caz xx

    October 12, 2019 at 3:08 pm Reply
  • Naomi Brook

    Great blog as always! The acceptance that there’s no cure is definitely a path I recognise but then meeting others who seem to think you might ‘get better’ can be tricky… you’ve accepted, but they haven’t. Just another part to navigate!

    October 13, 2019 at 7:20 am Reply
  • Sheryl

    Thanks for joining us as always, and also for the insightful thoughts! The waiting game isn’t fun at all with chronic illness, and I love that quote you made, it’s a good reminder.

    October 14, 2019 at 3:46 am Reply
  • Carrie Kellenberger

    Brilliant article, Rhiann. I really loved this quote in particular:

    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. 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.

    I also laughed when I saw that we are both waiting, waiting, waiting. It seems like although our bodies are out of tune, we’re at least all in tune with each other! Gentle hugs, sweet lady!

    I’m so sorry I didn’t have you on my blogroll now. You’re added and in my thoughts.

    October 15, 2019 at 7:51 am Reply
  • Georgina // Chronillicles

    Hi Rhiann. This depicts the life of a chronic illness patient very well. And it was a really interesting read, too, especially what you’ve written for ‘loving’. It’s definitely much easier to love others than it is to love yourself!

    Georgina ?

    October 16, 2019 at 8:45 pm Reply
  • Chronic Mom

    I think waiting is the hardest part of chronic illness for me!

    October 17, 2019 at 7:05 pm Reply

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