The Nagging Questions of Chronic Illness

Allison Ross avatar

by Allison Ross |

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chronic illness | ANCA Vasculitis News | A graphic depicting two intertwined wind funnels: one swirls medications and bills into the sky, and the other swirls books and flowers.

It sometimes feels silly when I receive an invitation for an event happening more than a year in the future. This is because the details of my everyday life can be so overwhelming it’s all I can do to focus on the here and now. Maybe I’ll focus on next week, if I have the mental capacity for it.

Chronic illness patients know the importance of taking one step at a time. But paradoxically, we also need to be prepared for dangers and setbacks that could happen without warning. It’s an uncomfortable push and pull that addles our brains and overwhelms our nervous systems, and we experience it almost daily.

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The line between healthy concern and fixation

I remember the famous biblical words from the Sermon on the Mount: “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34). Different translations of this verse include the word “anxious,” or even substitute “evil” for “trouble.” Regardless of how it’s interpreted, the concept of “What if?” is clearly as old as human nature.

In the modern era, where life moves more quickly and we are constantly plugged in and distracted, it’s easier to feel the pressures of time, work obligations, and connection to our families and communities. I prefer to bite off chunks of responsibilities in smaller segments, because I simply don’t know what challenges might lie around the corner. If I can chew smaller bits, it makes life seem less overwhelming.

The feeling of anxiety in my chest — the tightness, the loss of appetite, and the shortness of breath — is sometimes more severe for someone with medical concerns. The fear of the unknown goes hand in hand with any illness, including mine, granulomatosis with polyangiitis.

So, we find ourselves living on the edge of a delicate balance. One part wants to be cautious and make wise decisions for our future, in case our health takes a negative turn. The other part says, “C’est la vie. You already suffered enough. Go out there and live a little.”

The ‘what ifs’

Some of the questions swirling around my head are nearly omnipresent, and after many years, I’m still learning to face them in a balanced way. These include:

What if my disease relapses?

When I was treated with rituximab in 2013, it was a six-hour procedure. I sat in an outpatient lab chair with a needle in my arm, reading books and generally trying to keep myself entertained and distracted. It was irritating and time-consuming, and the next day, I didn’t feel well at all. But it catapulted me into remission, where I am grateful to remain today.

That’s where I am for the time being, but there’s no guarantee it will stay that way forever. Living in remission feels the same as enjoying a nice day but not knowing when the sky will turn dark and threatening. The unknown is that foreboding rain cloud that blocks the sunlight from view.

What if I can’t keep up?

Some days, even normal life seems oppressive. Fatigue is real. I don’t worry about this on any given Tuesday, because I’ve developed the coping mechanisms to support myself. But the concern remains: If there’s an important event in the future and I need to be on top of my game, will I be able to handle it?

What if I go broke trying to stay healthy?

So much of chronic illness is tied to finances. Remember that rituximab procedure I described earlier? It cost nearly $60,000. Fortunately, I had great insurance at the time.

For the majority of people who aren’t wealthy, a hefty price tag is attached to diagnoses and treatment plans. These problems pile higher when we don’t have good insurance or require a hospital stay.

Every visit to a specialist, every trip to the pharmacy, every lab test, the dollar signs float above me in the air like ghosts, evaporating my income. Cha-ching!

What if I lose friends or become distant with family?

People are such an interconnected part of our illness trajectory that it’s hard to imagine going it alone. But circumstances change. Friends come and go. Family, though more difficult to cut ties with, aren’t guaranteed to be supportive forever.

That’s partly why I build a strong foundation of self-reliance. I’ll always need community, but in the times the foundation seems to crumble, I’ve still got inner strength and personal fortitude.

The ultimate decision

In a life of uncertainty, we have two options: worry or remain balanced and optimistic. And that’s not always a voluntary choice.

Today, I choose to be positive and enjoy life. Tomorrow will worry about itself. And as for those events taking place in 2023, I’ll be happy to decide whether I can attend when the time comes.

***

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

Comments

Greg Patterson avatar

Greg Patterson

I enjoyed the comments and positive words. I'm newly diagnosed and in the middle of treatment looking forward to remission one day. They more I learn and accept, I realize this is definitely a lifestyle change, but just different. Throughout my years a a physical therapist, I often help my patients to see that even though they are going through a life changing event, they can and will be successful doing things a little different way than others, but anything is possible with hope and a positive resilient outlook. The hardest part right now is the burden I am to others especially my wife. I look forward to the decline in this need. I can deal with the fact life is a little different going forward, but impacting others since I can barely walk to the mailbox really stinks. But, those days are short and looking forward to the return to handyman, long distance runner, dad, husband, etc. Thanks again for the great words of encouragement.
Greg

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Linda Sax avatar

Linda Sax

I have not responded here before but I just want to encourage you and admire you for writing at your stage. I got the disease a year ago. I am now in "remission" under aggressive treatment. It took a "long time" for me to walk, talk, hear, chew food etc. Now I average 5 miles/day of walking and run about 1/2 mile of that. May you be able to soon walk and run again. Nevertheless, every day is challenging. But you must do it for your kids, wife and yourself! You will prevail! By the way, I am probably much older than you.

Please rest every day (and connect to Gd if you are a believer). Rest and sleep help tremendously. Some medicine interferes so do it whenever you need, if possible.

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Catherine Nellis avatar

Catherine Nellis

An excellent article and one I can absolutely relate to given that I too have GPA and in remission. This is one I will be sharing with my family as I feel at times they don’t quite understand how difficult dealing with the disease can be. The fatigue, the anxiety and as you rightly say the fear of the unknown.
Many thanks for highlighting the issues.

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Kathleen Banks avatar

Kathleen Banks

Long may you continue in remission and thank you.

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