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Goodbye 2020

The year 2020 is one none of us will ever forget. It’s easy to think about all of the ways this year destroyed and disrupted our lives. But we know many people in the chronic illness community also like to reflect on the ways that hardship and grief can lead to strenghth and resilience. After all, recognizing the positive that can come out of the negative is such an important part of coping with a chronic illness to begin with.

We asked patient advocates in the CreakyJoints and Global Healthy Living Foundation community to tell us about their year: What good has come out it? How has it changed you? What are you grateful for? What are you looking forward to next year?

Their answers below are relatable and hopeful. We hope they inspire you to reflect on your 2020 and perhaps reframe some of the challenges as opportunities for growth and change.

What is something positive that’s come out of 2020 for you?

Two additional cats and lots of plants. And a newly renovated bathroom in my house. Regarding disease, the sudden accessibility in many areas of society has been great (i.e., telehealth, teleworking, and expansion of grocery delivery, and masks — although upsetting because we’ve asked for years)! — Charis H., who lives with ankylosing spondylitis

Something positive that has come out of 2020 is that I am growing my friendship circle and meeting so many wonderful peers with the same issues as me. I feel very grateful to have met so many this year. — Ashley K., who lives with psoriatic arthritis

Both my parents are almost 86 years old. I was able to get them into a senior citizen building that doesn’t have any steps. My father gets around well and still drives, but my stepmother has fallen down the stairs four times. It was time to make a move. — Diane T., who lives with psoriatic arthritis

I renewed connections with old friends and I lost 20 pounds. — Frances D., who lives with psoriatic arthritis

An appreciation of the simpler things, like staying at home with family, having enough food to eat, and wood for a fire. — Brandy H., who lives with rheumatoid arthritis

The year 2020 has been hard on everyone but through it all what’s been positive for me is: I’ve been able to financially stay afloat and have not missed one paycheck. Also my job has been amazing throughout my whole transition with my children and remote learning. My health has remained stable. I am so grateful for all my health providers. Finally, despite my family having COVID, we have all survived and remain strong. — Deige W., who lives with rheumatoid arthritis

Even though 2020 seemed like an endless dark tunnel I was blessed to have some great things happen in my life. One of the most positive things that happened was to be able to be part of some great presentations representing patient leaders and advocates. Sitting next to health care professionals sharing my experience and relationship with my physician to help patients and health care professionals have better relationships. — Daniel G., who lives with HIV/AIDS

For safety’s sake, I’ve had to pass on visiting my 87-year-old mother who lives about a thousand miles away. The upside is she learned how to FaceTime and we have a standing get-together for two hours every Saturday. I take her to the beach with me. We eat together. We critique each other’s outfits and hairstyles. We share stories. I have learned so much about my mother’s life prior to her being a wife and mother. Because of COVID, we’ve found a new way to share our love. — Cynthia A., who lives with juvenile idiopathic arthritis

That I’m in RA joint remission. And I had an opportunity to share my story with Self.com. I was able to share it with several coworkers and the response was great. —Brenda K., who lives with rheumatoid arthritis and is a brain tumor survivor

This year has taught us how to adapt, pivot, problem solve, and innovate to keep life, work and our health taken care of. — Chantelle M., who lives with rheumatoid arthritis

The realization by work colleagues of how hard daily life with chronic illness really is (they had a taste of this with their recovery from COVID-19) and their increased compassion and desire to help me (and others with chronic illness) in ways that they took for granted before they were sick. — Beth M., who lives with rheumatoid arthritis and lupus

My mother understood what my condition entails, and she respected that I couldn’t go out at a moment’s notice to help her out. Therefore, she cooperated and helped more with things that she needed to be done (she understood that she was not the center of attention). — Denise S., who lives with rheumatoid arthritis

I realized that I am stronger than the circumstances. That a good attitude can define my physical and emotional well-being. — Wigna C.

How have you grown stronger/healthier/more resilient in 2020?

Because of the pandemic, I haven’t been traveling at all. The break has been amazing, allowing me to really begin to nest in the house I bought in 2019 and focus on my health. I grew my own vegetables in my garden this year, which helped my physical health and my mental health. — Charis H.

One of the ways that I’ve grown is I’m much more assertive on my own behalf. I am making decisions for me and for the betterment of my future and doing it in a way that benefits me. It has been a learning curve to understand the line between being selfish and doing what I want and need for my health and happiness. — Ashley K.

This year has taught me that I am stronger than I think. My mother fell and crushed her hip in February and had to go to a nursing home afterward. When we thought she was ready to come home, the facility fought me and my dad. But because of the pandemic I could not just go to offices to speak to people. I made calls to my senator, governor, town council and wrote appeal letters. I was not afraid when people hung up on me; I just called another person, which made me stronger each time. They finally let her go, but it took months. I realized that being a patient advocate is powerful and I was so happy about all that I have learned on this journey. — Diane T.

I reached out when I was feeling depressed and someone answered with a Zoom call to lift my spirits and it worked. I also joined an online depression support group and I feel mentally healthier. — Frances D.

I don’t feel stronger or healthier, to be honest, but it’s different and rather bold to admit it on a public forum. Having a chronic illness means “putting on a brave face” for many occasions, but it feels good to be among peers who can handle and relate to the truth. — Brandy H.

I’ve grown stronger, healthier and more resilient by putting me first. Self care has become a priority for me in order to keep my mind, body and soul at 100%. — Deige W.

A way that I have grown in 2020 happened when my mother passed in August. It was a pain beyond anything physical I’ve been through. It was the lessons she taught me as a kid that helped me get through it. Although I ignored my health regimen for a while I bounced back and I have a more resilient soul, a stronger spirit, and a healthier mind. — Daniel G.

To better socially distance, I’ve gotten up the nerve to join the buff and beautiful crowd swimming laps in the 12-foot-deep pool rather than exercising my mouth as much as my body in the therapy pool. — Cynthia A.

I started working out almost two months ago in the mornings. I find that it helps me get a good start to my day. I also walk a half mile to work and back, most days, even when it’s colder. I decided that I have to try and keep myself as healthy as possible and keeping my strength up, will certainly help. — Brenda K.

Resiliency. 2020 has taught me how to bounce back from some very tough times to keep on an even keel (for the most part). — Chantelle M.

Working from home has been a HUGE help with my daily health and has taught me that taking steps to care for my health helps me to better help others for the now and for the future. —Beth M.

I learned to take better care of myself. I got all the vaccines: influenza, pneumococcal, tetanus. They changed my medication again, and being at home, I was able to be more aware of any changes. My husband helps me administer my RA treatment. — Denise S.

Faced with the pandemic, I became stronger and fearless by having access to reliable information from good sources. That detail gave me the mental and emotional stability to keep going. — Wigna C.

What is something or someone you’re grateful for in 2020?

A local nonprofit received funding to completely remodel my bathroom so that it’s safer, accessible, and fully functional. I bought a house last year as-is, so every room needs a lot of work, but having a bright and open bathroom where I have already hung lots of plants has been a big source of joy. — Charis H.

Someone I’m grateful for this year is my mom. When I feel overwhelmed or down, my mom keeps me grounded and moving forward. She truly is my hype man. — Ashley K.

 I am so grateful that my parents are happy and growing stronger together every day. They live alone and refuse to stay with anyone; I feel so blessed to be able to give them whatever they want (within reason). I am also grateful for learning all about Medicare, Medicaid, and our health care system. There’s a lot more to it than I realized. I’m happy for my six grandkids. I haven’t been able to spend any time with them, but we do wave from the door. With me having an autoimmune disease and around my parents all the time, we don’t take chances. — Diane T.

I’m grateful that I have a job that is making everyone work from home full-time.  I’m grateful that my new psoriatic arthritis medication is working so well that I feel like I’m living a normal life. — Frances D.

My husband, who is a source of boundless support and love, and our dog, Moosey, an almost 16-year-old Boxer mix who brings happiness everywhere she goes. — Brandy H.

In 2020 I am grateful for my sister and mother, who have been such a strong support system for me. I am also grateful for my awesome therapist. — Deige W.

Something I’m grateful for in 2020 is reaching 13 years of being clean and sober. — Daniel G.

The gift of time to step off life’s treadmill and reflect on what I would like my future to look like after COVID. — Cynthia A.

Delivery service for groceries and food from various eating places. I’ve met some great people, who were so happy to have a job. — Brenda K.

My husband. He’s been an incredible support through some of the most trying moments. Losing my mother to COVID was swift and unexpected. He understands that grief isn’t just a few days off and I’m thankful for that. He’s also helpful with my work, picking me up on my in-office days and reminding me to eat breakfast. — Chantelle M.

I’m grateful for my university in doing everything possible for faculty, staff, and students to connect and succeed in these new and continually changing circumstances of the pandemic:  people working together for one purpose of helping people. — Beth M.

My husband — he was so attentive of my needs (more than ever). He learned more about my condition. I felt he was afraid of losing me. — Denise S.

Very thankful to God. Because despite being a different year and with many challenges, I never gave up and there was always something that gave me a ray of light and hope when I thought I could no longer do it. Although there were periods in which I did not feel good in health, I was able to cope with it and get back to feeling good. — Wigna C.

What are you looking forward to in the new year?

I’m excited about having the energy to dig into health symptoms I haven’t had the energy to pay attention to, because 2020 allowed me to stay home and rest. I have a little more energy to do things I’ve been putting off. I’m really eager to get to the bottom of things and get answers. — Charis H.

In 2021, I’m grateful for a new executive branch for our country. It has been a rough four years and I am grateful to be turning a new, more positive page. — Ashley K.

Sleep and spending time with my husband Alvin of 25 years and our dog Flappy, a beagle who is 2. — Diane T.

I’m an extrovert, so I’m looking forward to socializing with my friends.  I’m looking forward to traveling after I’ve been vaccinated. — Frances D.

Hugging my friends and their children. — Brandy H.

In the new year I look forward to more blessings for my family, as well as a new home and a new puppy. — Deige W.

One of my goals for 2021 is to put myself out there more and to share my experiences with the Latino community in Spanish. — Daniel G.

Venturing out in my decked-out SUV for camping trips. — Cynthia A.

Advocating for the National Brain Tumor Society. Looking forward to working with President-Elect Joe Biden’s Administration, as he knows firsthand what it’s like to lose someone to brain cancer. — Brenda K.

I hope to see family and friends without an electronic device involved. — Chantelle M.

I’m looking forward to being a first-time grandmother and (hopefully) book author in 2021. —Beth M.

For COVID to end and to be able to be with the family again, because we learned to value life and family more.  — Denise S.

Being able to be in contact with the people I love and with the people who are important to me, including my friends and my family from this foundation. — Wigna C.

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