You Don't Just Miss Out on the Fun When You're Chronically Ill

You’ve seen the advertisements — the ones where the moms can’t participate in the joys of everyday life because of chronic pain, but then the miracle of (insert popular drug name) has them doing all the fun things with the family by the end of the 45 second spot. You’ve heard the stories of people who can’t do what they used to anymore because of chronic pain or other illness. And a great many of those stories have to do with the ways that people cannot participate in the joys of life.

This is a serious concern. My own slow and steady isolation due to chronic illness brought on increased depression and suicidal ideation. It is really difficult to live life with few joys and loads of concerns. It can feel impossible some days, and it takes immense strength to keep on fighting and coping with chronic illness, mental illness, and chronic pain.

But today, I am not concerned with missing out on a joyous occasion. Today I am missing my grandmother’s funeral.

I had a minor procedure last week, but because the “twilight sleep” doesn’t work on me, and I stay fully conscious and remember every second of procedures attempted with that method, I need to have even minor procedures done under general anesthesia. Obviously, this puts stress on the body, and my body is chronically ill to begin with, so flare-ups and complications are a risk.

I had a dry cough from exposure to environmental allergens when I went under, and the surgery was quick and seemingly successful, which is fabulous. But that dry cough, a day after surgery, turned into an extreme case of bronchitis. My asthma was triggered as well, and I ended up on steroids first, then in the ER for a
breathing treatment and X-rays to rule out pneumonia or other complications from the surgery. Then I was on prescription cough medicines, opioids, inhalers, and basically immobile. Every time I move, I have a fit of coughing so terrible that I end up curled in a ball on the floor clutching my torso because the pain and loss of oxygen is overwhelming. And it was during this mess of suffering caused by a weak immune system and chronic illness that I received the news that my grandmother had died.

The news that the funeral would happen on Saturday morning came on Thursday morning. This didn’t leave much time for travel plans. I live about eight hours from my hometown, and I live in the city, so I don’t have a car. (Even if I did have a car, it is advised I do not drive due to my medications, apnea, and chronic fatigue.) I also live on the tiny sum of $735 a month that SSI benefits pay to a single, disabled woman. The combination of financial constraints, physical limitations, illness, and other factors made it impossible for me to travel on short notice.

My insurance wouldn’t pay for an early refill on medication that I need to manage pain. I have a negative bank balance. I could borrow some money to get my daughter on a bus “home” to be there, but with my health in such a state, I would have had to sit on that bus for 12 hours wearing a mask over my face and without adequate pain management… Only to get to a town that triggers all sorts of negative emotions and memories, and spending time with people who are very insensitive and don’t have understanding or grace about my illness, my limitations, or my resulting financial challenges.

This isn’t meant to be a litany of whines.

It is meant to express that the challenges that I face, as a person with chronic illness, mental illness, and chronic pain, are not just challenges that limit me in ways that take away things that could be considered
“privileges.” My illness takes away very basic, common life experiences.

None of us are promised all joy all the time. And those of us who live with chronic illness know that the joys need to be cherished, because we miss out on a lot of the things that others take for granted. But what many outside of the chronically ill community misunderstand is that we aren’t just kept from the “cherry-on-top” moments of life, we are kept from the bread and water of living. We don’t just miss the fun times, we miss the important times. We miss saying goodbye to our grandmothers.

My illness is keeping me from grieving in the way I wish to grieve. It is keeping me from being with my dad and my daughter as they attend the funeral, and from offering and receiving comfort. And this isn’t the first time, and won’t be the last time, that I have been kept from an event that bears great importance because of my chronic conditions.

Those commercials I mentioned at the start, they don’t portray people missing out on funerals. Why would they? Nobody wants to think about being well so they can attend funerals! That seems ridiculous. But it is a reality. The ads aren’t realistic at all. Not only does (popular drug) not have me out picnicking and playing ball, it does not have me able to travel to lay my loved one to rest.

When you see those commercials, and you hear stories of the fear of missing out (FOMO) from those who are chronically ill, there are some truths there — we all want to be well enough to participate fully in the human experience. I want to picnic and play ball. I want to work, travel, visit with friends, go out to dinner, pay my bills, clean the house, groom my own toenails, breathe air, and just be a “normal” human doing “normal” human things. I don’t need lavish parties or dancing at the club — just everyday living.

But I don’t have that. And I likely never will have just everyday living.

I’m missing out on the things that make up the root base of living, not just the ornamental details. I’m not only absent for the joys … I’m absent for the sorrows. And that is far more difficult. That breaks me. That hurts me.

Being homebound when I want to be holding my family close is devastating.

Chronic illness takes things that many wouldn’t imagine. And it is this moment — this mourning together and sharing the memory of a beautiful life — that is hardest to have taken from me.

Of course, I will have my own little ceremony of sorts this morning, and remember my grandma in a special way. I will grieve the loss, and will continue to move forward. I will eventually get rid of this cough, start to feel a bit better, get my medications filled, manage my pain a bit better, and find some stasis.

It won’t be “normal” everyday living, but it will be my baseline for living my best and healthiest — my new normal, with chronic conditions. Part of coping with such conditions is learning to accept that my new normal includes not being able to do, and to be, and to go as I wish and as I will. And sharing that truth, and disseminating that information to the public — letting others know that my illness isn’t just stealing mimosa brunch, but it is stealing the most basic human experiences — helps me learn that acceptance.

We aren’t whining over not being able to picnic and play ball. We are missing out on life. And that hurts more than our physical pain.

So, give us some grace, please. And acknowledge that having your “normal” life stripped away layer by layer is a loss that we should not have to experience. Let us hurt, and let us mourn, and understand what we give up because of our disease. Chronic illness isn’t about missing out on fun, it’s about chronic loss, chronic change, and chronic coping.

Finding that new normal isn’t easy, and every event like this one, where I am kept from living in the way I want to because of my health challenges, makes me compare my life to those who don’t share my limitations— concluding that my limits are unfair. (They are unfair, but that doesn’t make them go away.) I need that grace and understanding from others, because it is very hard to offer it to myself in these situations.

Because I want to be there. I want to fight against this illness, ignore my health, suffer through my pain, screw my budget, and be there. But I can’t. And I need to be reminded that my normal, and not being there, is acceptable and good and the best decision for me.

My dad said to me on Thursday, “Don’t feel you need to be here for me. I’m OK.”  That was a statement of someone who understands and respects my limitations. He reminded me that taking care of me was more important than taking care of him.

He was right. I need to get my medication filled tomorrow. I need to get this cough under control. I need rest, not the triggers of a goading, ignorant family member that increase anxiety and cause unrest.

I need to miss this funeral.

Chronic illness is making that decision for me, and that sucks, but it is my reality. My disability often means I am unable to attend important events — even the events that are not at all fun.

It is easy to imagine that people who are chronically ill are missing out on privileges, so it isn’t really important that they are missing out on things at all —because we aren’t promised birthday parties and bowling tournaments and brunch with friends. But chronic illness takes away indiscriminately. It takes away fun things, but it also takes away not fun things that are important for us as human beings. It strips away humanity, and changes our lives in significant ways.

Today, chronic illness is taking away my presence at my grandmother’s funeral. That isn’t a fun privilege, but an important event to help me process grief together with my loved ones. So, I will say again that chronic illness takes away indiscriminately. And when addressing those with such illness, please take care to understand, acknowledge, and respect those losses.

Now, I leave you to go and honor an amazing woman who lost much and lived on with grace and understanding. She deserved my presence today. And my amazing dad and my fabulous daughter deserved my presence today. They have lost much and live on with grace and understanding.

I challenge you to follow their example, and to live on with that same grace and understanding.

Grandma Great, I love you. I will miss you so very much. Thank you for being a part of our family, and for loving us so well. I remember you saying over and over how much it meant to have Rayven there with her joyous smile as a comfort when Grandpa died. I’m sorry I couldn’t get there today, but I sent our Rayven with her joyous smile as a comfort. Rest in peace. 

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741-741.

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