Life With Chronic Illness Brings Both Highs and Lows

Charlene Marshall avatar

by Charlene Marshall |

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Throughout their lives, many people experience an array of ups and downs. Days, months, or even years can be plagued with challenges that seem unfair.

Conversely, people also can experience prolonged periods when things go well.

Rare disease patients who frequently experience ups and downs caused by their illness know that life isn’t linear.

Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, many significant things have happened in my life that are both good and bad. Many were memorable experiences that changed my life narrative. Examples include job loss due to identifying as having a disability, relationship breakdowns, and on the flip side, a more meaningful career, new relationships, and frequent travel opportunities.

In the moment, it can be hard to see past difficulties or hope that things will get better. I hate hearing common statements like, “You have to stay positive,” or, “Things will get better.”

To an extent, these comments are generally true: Life usually ebbs and flows for all of us. But what about those of us living with a debilitating lung disease like IPF? Toxic positivity can be dangerous for rare disease patients, despite people’s best intentions.

Believe me when I say that it’s easy to be consumed by the negative when living with IPF, whether it involves depression, grief, sadness, or anger. Patients experience a range of emotions when navigating a chronic illness, and it’s hard to feel like things will ever improve.

While our disease won’t improve because IPF is progressive, some aspects of our illness will ebb and flow. In this column, I want to highlight the various ups and downs that rare disease patients often experience.

If you are a fellow patient stuck in what feels like a long and difficult period, I hope this column helps you to remember that life with a chronic illness isn’t linear, and things will get better.

Emotional ups and downs

It seems impossible to write about all of these because there are so many. Sometimes I get stuck in a downward spiral of feeling sorry for myself because I have a life-threatening lung disease as a young adult, and I become overly emotional. I grieve the physical abilities I’ve lost, especially my ability to play sports and remain active.

The emotional aspects of having a chronic illness are often overwhelming, but it’s important to reframe your experiences. For example, I struggle with no longer being part of a sports team, but I’ve since become a member of other teams that are hobby-based and less physically demanding.

Physical ups and downs

Lung disease is one of the more physically debilitating chronic illnesses. You need to be able to breathe to do anything, so it’s easy for an IPF patient to feel down due to the fatigue or the dyspnea we experience regularly. Patients also must factor in illnesses, since many of us are immunocompromised, and the recovery that follows prolonged hospitalizations or illness.

When I am physically well, I sometimes forget about IPF and can cope. Other times, when I am struggling with all of the symptoms of this cruel lung disease, it feels like I’ll never emerge from the difficulties and experience normal life again. I yearn for the days I feel well and never take them for granted.

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Social ups and downs

Sometimes my friends understand my limited abilities due to IPF, and sometimes they don’t. However, the hardest social aspect of having this disease is telling new friends, colleagues, or relationship partners about it.

Knowing I have to tell someone new that I have IPF feels like a weight hanging from my shoulders. I often feel down about the fact that peers my age don’t have to disclose a serious illness when they meet someone new. When thinking about reframing this, I try to remember all of the new friends and social opportunities I’ve had as a result of my illness.

Televangelist Robert Schuller once said, “Tough times don’t last; tough people do.” This applies to the ebb and flow of life. It’s important  that everyone, including those with a chronic illness like IPF, remember that life is not a linear journey, and experiencing ups and downs is normal.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

darlene lowery avatar

darlene lowery

Thank you for sharing your story. It was surprising to read you are only in your 30's.
I am caring for my 90 year old father who was diagnosed with IPF back in 2014. He started the medication Esbriet about 16 months ago, plus I have him on herbal and essential oils for the lungs.
It's good that you are staying active and wondering if a lung transplant is an option for you.
Wishing you more ups than downs in your journey.

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motikhatwani avatar

motikhatwani

I feel happy to read all newa articles

Reply
Michelle cameron avatar

Michelle cameron

Hi I was diagnosed 3yrs + i have other illnesses S.L.E but i only started having severe problem when i was put into induced coma wen i came out lost speech had to have speech therapy couldnt walk without a walking device plus didnt understand why i couldnt walk without stopping every other step to catch my breath its a very frightening sorry if i am abit negative has anybody got any ideas how to get all the rubbish of your lungs
Thank you 🙂

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Robin Read avatar

Robin Read

You are right Charlene attitude is everything I have had IPF for 6 years ,was sailing along without oxygen ,suffering from a cough and fatigue but still played golf ,socialized ,kept all my friends and then caught cancer as well ,6 mos of chemo ,could not walk ,was in palliative care. I insisted on going home ,lucky to have a loving wife and great caregiver who told me to be positive. Cancer went into remission,left me weaker on oxygen but can still walk again. My friends thought I was really unlucky to get these two diseases,I think I am very lucky to be where I am thanks to good doctors and a great wife.

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Ping Xu avatar

Ping Xu

Charlene, your writing brings me into tears and I felt like someone truly understands what I am going through now. I am recently diagnosed. I try to stay positive but sometimes a picture of a mom seeing her daughter graduating from college or getting married would make me very emotional as I am not sure whether I will be able to see that day. My daughter is only 8 years old. This is such a challenging journey.

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Brenda Gaier avatar

Brenda Gaier

I am newly diagnosed with IPF. I'm afraid for what's ahead. My doctor is putting me on prednisone and an antibiotic. The 2 pills available come with many bad side effects. I asked if I was at the beginning of this disease and she said more moderate. I'm lucky because Mayo doctors caught this right away. I've read it can take as long as 2 years to be diagnosed. My husband died from cancer. He was at stage 4 kidney cancer when diagnosed. I hope this disease isn't as destructive but it doesn't sound like it is. I have to go on oxygen already. Is oxygen prescribed for all IPF patients? Where do I find longevity averages of patients? The reality of a disease I've never heard of hard to accept.

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