Arthritis / Arthritis Ashley / Autoimmune / Awareness / chronic illness / Fibromyalgia / invisible illness / Juvenile Arthritis / Lupus / RA awareness / rheum awareness / rheumatoid arthritis awareness / SLE

Life Isn’t Fair: Finding Gratitude through The Grief of Chronic Illness

Sometimes, I get really mad and really mournful in regards to my health situation. And that’s okay. Keeping a positive outlook, being  happy, remaining grateful, and staying strong do not mean that everything is perfect or that it’s all rainbows and butterflies all of the time. It is possible to be positive and strong and all those good things while also being human and honest.

No one – healthy or not – is happy all of the time — and no one would reasonably ever expect those of us with these illnesses to be happy all of the time, either, if they knew how awful they could truly be. I don’t think there is a problem with what I call, “realistic optimism.” To me, this entails remaining hopeful, keeping a positive attitude, finding the good in every day, but, also, not being delusional or in denial or fake. It involves doing what we can while being aware of what we cannot. It is about perspective and focus and where we choose to place that perspective and focus. It is about making active choices to live an overall healthy and happy life, even one that isn’t perfect.

They say that imperfection is beauty; that cracks are how the light gets in.

I surely was imperfect this week. I got really angry. I had a sobbing meltdown in my kitchen about how messy and unclean my house was because, if I’m being honest, sometimes it really doesn’t feel fair that simple tasks such as household chores and cleaning are so difficult for me because of my icky health situation. And that same day, I looked in my bathroom mirror, and I didn’t recognize the person staring back at me. She looked sickly. I couldn’t understand how much my appearance had changed in subtle ways, in the 8 years since I met my husband. I’m sure some of it was normal aging, but most of it was not: and that didn’t feel fair. Why did I have dark and barely-concealble circles under my eyes? Why was my hair sparse, dry, brittle, and thin? Why was I pale? Why did I have constant rashes everywhere? Why did it physically HURT just to be alive? And that may sound harsh, but if you live with rheumatic disease, you know what I mean: it is truly physically painful to even just EXIST some days.

This week, I got mad. I got mad that a box of Enbrel and a Cefaly medical headband arrived at my doorstep instead of some new clothes from Express, or a Louis Vuitton handbag. I got mad that in the past 5 years, I’ve incurred tens of thousands of dollars in out-of-pocket medical costs and health-related expenses that could have been put towards a new house or a future trip or a new handbag. I got really mad that my body and my health are part of the decision process when it comes to whether or not we have children. There’s a large part of us that isn’t sure that we even want kids, but, the fact that my health dictates part of that decision is really crappy. I want the decision to just be up to ME, without my health problems playing any kind of role. But, truth be told, every decision I make is clouded in some way by my health. Do I cancel Girls Night Out or not? Do I go to that lecture on Saturday and that fundraiser next week or should I not commit because there’s a good chance I’ll be sick? Should I still go to my doctors’ appointments or church if I’m too sick to drive? Should I take on this new writing or consulting job? Will I be well enough to handle it?  Will I be well enough to cook dinner tonight? What can I cook based on my symptoms today? Will I be able to exercise, or not?

Then, there’s the anger over missed opportunities. If you’d met me 10 years ago, you’d have been fairly certain that I’d be doing PR or being a writer and living in New York City, a staple at events and parties, and somehow connected to the fashion or entertainment scene. I’m very blessed and live a great life, and I think things happen for a reason. So, I’m grateful for where I am — but that doesn’t mean that I’m not sad that my health prevented me from exploring that world.

There’s anger over the guilt and worry and anxiety that these illnesses cause, too. Why do I have to decide between potentially-dangerous drugs or living with pain? Why do I have to worry more than the average person when a cold won’t go away or when I have a terrible headache? Why am I even angry when other people have it worse?

I’m not a “woe-is-me” type. I would never be considered by most to be bitter in any way. I don’t want pity and I don’t feel sorry for myself. I do realize that it could be so much worse and that for a lot of people, it is. BUT, for most people, it isn’t worse, and they’ll never understand how bad it can be. And so, I do sometimes have human moments of straight-up anger. It’s sad that so much of my life is dictated by my illness. It’s sad that it’s taken a toll on my career, my looks, my finances, my social life, and more. It’s frustrating to have many days or even months in a row where I feel sicker than some people will ever feel in their entire lives. It angers me that sometimes others cannot comprehend the seriousness of these conditions or the level of sickness and pain associated with them. It angers me that I have to mourn the “old me.” It angers me that I don’t remember a life before having health issues because I was only a kid when I got diagnosed with JRA. And then it angers me that I get angry.

BUT, that anger is fleeting, and catching a glimpse of it is rare. I don’t get too sad too often, and, when I do, it’s a normal, human, healthy reaction to a crappy situation. I try not to let the guilt or the frustration consume me, but I also think it’s important to feel what we’re feeling, to own it, and to mourn however we need to mourn.

However, human nature dictates that it’s it’s easier to dwell on the bad things and to facilitate that catastrophic thinking — but just because it’s easier to do that doesn’t mean that it’s right or healthy to do so. Life is all about balance and moderation. I think that if the scales start to tilt too much towards always being negative or always feeling down, then some kind of intervention needs to be put into place: medication, a counselor, a lifestyle change, or a therapist. Happiness, though, is like oxygen: we need it to live and to grow and to thrive. We can have vast abundances of it with no ill effect. We need those good vibes to flourish. While negativity sucks the energy and the happiness out of ourselves and those around us; positivity and happiness do the opposite: these emotions inject life into us and those we share it with.

I have no trick to get out of a slump. I do think a good cry, a long hug, a warm bubble bath, and a good night’s sleep can help. I think prayer works wonders. I think that exercise and social interactions are key. I also think that positive distractions are a good idea. We’re going to have bad days: but so do the “healthy ones!” The important things are to not let the bad days outnumber the good, to try and derive lessons from the mess, and to always find something to be grateful for in each one of those bad days.

Yesterday, my husband spent hours helping me clean after my little “my-house-seems-dirty-and-cleaning-is-hard-for-me-lately” meltdown. That was something to be grateful for. I ended the night with pug cuddles and aromatherapy and had a nice, warm, comfy bed to crawl into. That was something to be grateful for. When I woke up in the morning, the sun was shining and I was greeted by a doberman kiss and kittycat purrs. That was something to be grateful for. So was simply waking up. I spent the day at a baby shower, celebrating the beautiful gift of life with an old family friend. Grateful. I spent the afternoon at a coffee shop. Grateful. Do I feel wonderful? No. But, I feel better than yesterday. Grateful.

See, there will be bad days and there will be good. And life will never be perfect. Life with illness is far from it, and, because of our conditions, life will be much harder for us than it will be for most. But, that doesn’t mean that life is any less beautiful or less value. Life isn’t fair. But life is good.

… AND: Before I go, I have to share this post below, because it is just too perfect not to!


2 thoughts on “Life Isn’t Fair: Finding Gratitude through The Grief of Chronic Illness

  1. Thank you for this post Ashley! This really resonated with me… I am finally in the place where I can say that I am grateful for my chronic illness, because it has allowed me to find my true purpose in life which is to help others! But like you I still have my bad days… and on those days I try to tell myself that I ended up with my illness because I am strong enough to handle it, and my experience allows me to help others that may not be quite as strong. 🙂
    Keep fighting girl! xo

  2. When I read this story I realized just how similar it was to my condition.

    Years ago, when my children were young, I developed rheumatoid arthritis. I became practically immobile and put on a lot of weight. Every move felt like torture and my knee joints suffered so much strain that I got osteoarthritis in my early forties.

    To make things worse, my husband left me for a “friskier” woman. After I got over my rage at my husband leaving, I realized that I had to do something drastic unless I wanted to be a cripple for the rest of my life.

    Fortunately, after searching far and wide, I came across some simple natural remedies that made my body feel better than I could remember. My joints loosened up and I had energy like I was running on rocket fuel.

    Most of what I did is detailed right here in this article:

    Hope it helps anyone reading this!

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