How Gratitude Has Helped Me Learn to Live With Lupus


Moving in with my parents at age 32 is not something I ever thought I would be grateful for. However, after one year of countless doctor appointments, one urgent dash to the emergency room, seven nights in the hospital and a discharge letter accompanied by a pharmacy bag full of seven different types of medication – I was grateful. Grateful to have someone else take charge, to make me food, wash my clothes and make sure I didn’t accidentally take the wrong cocktail from the pharmacy bag. I had been diagnosed with lupus, a potentially life-threatening autoimmune disease with no cure. Life as I knew it was never going to be the same. I had no idea how I was going to cope with this but in the year that followed I learned how – gratitude.

Rewind a year and I was a single girl in my early 30s navigating a career that had involved a few changes of path but had recently taken me to a job I loved working in marketing for a social enterprise and renting a tiny but perfectly formed one-bedroom apartment.

I had begun to have some odd symptoms including mouth ulcers, migraines and joint pain, but every test my doctor ran came back clear. One day, though the symptoms were worse than ever and I made an emergency appointment with my GP, after some tests she told me, “I’m sorry but you are going to have to go to the emergency room straight away.” From the emergency room I was sent to the neighboring hospital which had a specialist kidney ward where I ended up staying for a week and was told the reason for all this was a “serious but treatable” condition. Lupus.

This first year of living with lupus was the most difficult I have ever experienced. Coming to terms with the diagnosis, living with the fear it brought and feeling like I had lost my independence. But I also learned to find gratitude in the little things. Each day I went for a little walk and gave myself a target of going a bit further each time. And each time I did it the sense of achievement and gratefulness that I had gone that bit further than yesterday was overwhelming.

Friends went out of their way to visit me, to bring me silly presents that would take my mind off things and make me smile. And again I would feel gratitude. Things weren’t how they “were supposed to be” but I was alive and I was grateful for all the love in my life.

I started to keep a note in my phone of three things I was grateful for every day. Some days this was pretty humdrum and consisted of “walked for 20 minutes” or “ate delicious dinner.” Others it was pretty big stuff like “modern medicine” or “I am alive.” But whatever the notes were, being in the practice of taking the time to appreciate the beauty of every day helped to shine a light into the darkness.

A year and a half in and I’m doing well. I moved out of my parents’ house and into a shared house which has given me my independence back. My health is mostly good. There are some days when I feel exhausted and like my body is made of lead, but those days are far outweighed by good days. Days when I work hard at my job and see results, days when I spend time laughing and eating with friends and days full of my niece’s and nephew’s smiles.

My tips for living with gratitude…

Do:

1. Count your blessings (literally). In the notes of your phone, list three things you are thankful for today.

2. Practice mindfulness. It has become a trendy buzzword, but it really works. Try an app or take a class.

3. Spend time with people who make you happy. A simple one, but worth thinking about how you feel after an hour in someone’s company.

Don’t:

1. Compare yourself. That girl you went to school with who posts pictures of her perfect life on Facebook? What the “unfollow” button was invented for.

2. Become a Negative Nancy. If the culture in your office is one of constant complaining, try changing the subject. Or put your headphones in.

3. Get caught in the 24-hour news cycle. All the bad stuff going on can easily ruin your positive vibes. Try to limit how much you consume.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Popartic.

TOPICS
JOIN THE CONVERSATION

Related to Lupus

woman wearing a hoodie and standing outside near a lake

When I Tell People What Chronic Illness Is Like and They Ask, 'How Do You Do It?'

Recently, I was asked by my coworker how I was doing. I used my usual line: “I’m OK…” With my fake smile and quickly turning away, I can usually pass by without going in depth about how awful I really feel that day. She stopped me mid-step and said, “No, how are you feeling today?” I told [...]
woman sitting on her couch looking upset

What You Should Know Before You Judge Me for Being Home All Day

I gave up working over five years ago, five very long and overwhelming years, even before I had an “official diagnosis.” I knew something was wrong and I knew having multiple organ removals and multiple back surgeries in less than five years was not “normal” for someone in their early 20s, regardless of what the surgeon [...]
black and white photo of two friends smiling

6 Steps to Achieving Your Goals With Chronic Illness

If you have a long-term health issue, it can take years to get diagnosed. You may feel depressed when the doctor cheerfully says, “Good news, the tests are all negative.” “Yes, right, great news, there is no sign in my body that I am as ill as I feel,” you think. Then one day, at what [...]

Why It's So Important for Us to Talk About Chronic Illness

If you’re anything like me, early on in your diagnosis (along with the many other emotions going on) you felt a sense of fear and shame when thinking about discussing your new illness with others. I justified not talking about it by telling myself that my lupus didn’t define me and I didn’t want people’s [...]