By Trina O’Quinn for the NABBW:

Before I begin let me define the terms I am going to be discussing. There are two: 1- Chronic Illness and 2- Acute Illness. These explanations come from the Center for Disease Control, DSM-V, and Wikipedia.

A chronic condition is a human health condition or disease that is persistent or otherwise long lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, chronic obstructive pulmonary disease (COPD), heart disease, diabetes, Lyme disease, and some viral diseases – such as hepatitis C and acquired immunodeficiency syndrome (AIDS).

A terminal illness is one which is lifelong because it ends in death. It is possible and not unexpected for an illness to change in definition from terminal to chronic. Diabetes and HIV for example were once terminal yet are now considered chronic due to the availability of insulin and daily drug treatment for individuals with HIV which allow these individuals to live while managing symptoms.

Trina O’Quinn

In medicine, a chronic condition is distinguished from one that is acute. An acute condition typically affects one portion of the body and responds to treatment. A chronic condition on the other hand usually affects multiple areas of the body, is not fully responsive to treatment, and persists for an extended period of time.

Chronic conditions may have periods of remission or relapse where the disease temporarily goes away, or subsequently reappears. Periods of remission and relapse are commonly discussed when referring to substance abuse disorders which some consider to fall under the category of chronic condition.

As I began to write this blog post, my first working title was “Chronic Illness in the Time of a Pandemic.” The more I reflected on this theme I decided to change it to “Living with a Chronic Illness.” I am concerned that pairing illness with the pandemic would leave the impression that the pandemic created the chronic illness and that it would go away with COVID-19.

People may think this because so much of the media focus has been on the symptoms of Covid-19. I have had friends ask me if this could have been what was wrong with me all along. That is not true.

The pandemic only brought the conditions to light or multiplied the concerns of the individual living with any chronic illness. I will still be experiencing my chronic illness, fibromyalgia, when a cure is found for COVID.

Presently many of us with chronic illness, such as lupus, Multiple Sclerosis (MS), Parkinson’s, Diabetes, kidney disease, and fibromyalgia to name a few, do not openly discuss our symptoms.

Personally, during the pandemic, I live in double my normal anxiety.

If I talk about my health, etc., others immediately think I have the virus. The problem becomes I tolerate more stress and push myself harder than I need to in order to  stay well. The internal stress I carry exasperates both my physical and mental health. This is when I need to remind myself what I tell my clients: Remember self-care and set boundaries. When I do that, I become resilient and my chronic fatigue goes into remission.

The psychological impact of keeping a chronic illness a secret or telling people I am dealing with it  is overwhelming on a daily basis. Because it never goes away, my illness is either active (flaring) or in remission. In not talking about it to friends or family, I create more internal stress. I am suppressing the symptoms along with the secret that I have the condition.

In hiding my condition, even to myself, I sometimes push myself past the point of no return, meaning I keep going when I need to stop and rest and take Tylenol or Advil.  When this happens, the best result is that chronic fatigue sets in, and I am in bed for an unspecified time. The worst is that I fall and hurt myself even more.

When I do tell others or set limits on family or friends, they go into the “fix it” mode. They bring me advice for getting back onto my feet.

While scrolling through my news feed on Facebook, I came across a Chronic Illness Bingo Game, which inspired me to create my own, which you’ll see below. What personally aggrevating statements might you add, if this was your bingo card? Feel free to give your answers in the comment area, below.

I am intrigued, because bingo cards like this one showcase many of the theories and thoughts I regularly hear from the well-intentioned people in my life.

I’ve decided that I am going to think up a personal satisfying self-care reward to give myself when I get 5 replies in a row in any direction. Then when I get those five replies, knowing that I am now getting a desirable reward, I’m hoping I will be able to keep my energy focused on my body instead of my annoyance. In fact, playing Chronic Illness Bingo MIGHT even add a bit of levity to my life. 

So, what do I want to hear when I set limits with friends and family? I would like them to say, “I understand, call me when you are better? What can I do to help?” Finally and most importantly, “Congratulations on great self-care. I am proud of you. I know how hard it is for you to stop and rest. I care about you and hope to talk to you soon.”

Chronic illness is always my silent companion. It is always with me, ready to flare up and put obstacles into my life. I have many good days: so many that I sometimes forget that I have it, which means I forget to rest.

When that happens, my fibromyalgia reminds me of its presence, and I have to stop pushing.  I know to take this time to remember to reflect, rest, recharge, resolve, and be curious. In doing this I am able to make the changes I need to make in order to connect with others and enjoy my life again.

Trina O’Quinn is an actively licensed (California License # LMFT27407) Marriage and Family Therapist. Entering the profession as an older adult, Trina was in private practice for 30 years. During her career she was a lecturer at California University Dominguez Hills in the Marital and Family Therapy Program, where she supervised many students and mentored many associates.

Now retired, Trina keeps busy enjoying needle arts, reading, journaling and writing, as well as singing with a women’s chorus, peer networking, volunteering at a senior living center and reconnecting with old friends. 

 

NABBW Contributing Author