Like many people living with autoimmune arthritis, Rebecca Council’s diagnosis came with a lot of grief. After initially experiencing knee pain while working out, she noticed swollen finger joints just a few months later. Eventually, she was diagnosed with both rheumatoid arthritis and osteoarthritis.
“There are some days when I wake up in the morning, and I can’t physically get out of bed because my joints won’t move. There are times when my spouse has to massage my fingers and move my joints and rotate my ankles so that they start feeling better and I can get out of bed and be halfway functional,” she shares.
“It’s a lot of crying and [feelings of] ‘I can’t do this anymore’ and ‘why does this happen to me’ and all that stuff that you go through when you first get diagnosed and start feeling the pain, until you realize that it’s just part of who you are.”
Rebecca, despite the many challenges of living with RA and OA, finds motivation, relief, and inspiration in her unique support system of people and animals. She underscores that the journey of chronic illness is seldom journeyed alone.
The following are her words, describing her experiences, what her support system looks like, and how it helps her day to day.
Finding Support Through Family
[My wife] has grown to understand my face changes when I’m feeling pain and I don’t want anybody to know. She’s learned to read my face and learned to read the way that I stand or the way that I sit. That way, she’s more gentle saying, ‘Okay, I think it’s time for us to go,’ and it doesn’t always have to be, “Oh, Rebecca is not feeling well, we’re gonna go,’ it’s just, ‘It’s time for us to go.’
We’ve set time limits on how long I will be sitting a certain way or standing a certain way or things like that. With arthritis, if your joints are stiff, if you’re still too long, sometimes that can cause a lot of pain.
I think without her, I probably would just lay in bed and like cry all day on some days. She understands when I need a hot pack or when I need an ice pack without me having to tell her that I need one. Some days, I don’t really even know that I might benefit from. She helped me realize — I’m not troubling her; I’m being an advocate for myself for what I need.
Stigma in Unexpected Places, Support in Others
The LGBTQ+ community is probably one of the most understanding communities around because there’s more than just one type of illness that affects the LGBT community. We have lots of different stigmas that affect us as well. I will tell you a story.
The first rheumatologist that I went to was very much a bad doctor. I was in pain that day, and it was a really good day for me to go because I thought, well, if I’m having a flare, then she could definitely see it.
I was wearing a baseball cap, and I wasn’t exactly in the best of moods, but she said, ‘You know, you probably should take off your baseball cap. You have a really pretty face and it looks thinner if you’re not wearing your cap. You probably don’t have rheumatoid arthritis. You’re a little overweight, so you probably have diabetes.’
And I was like, ‘No, I don’t have diabetes.’
She’s like, ‘Are you sure?’
And I said, ‘Yeah, I mean, I get bloodwork done through my primary care physician. I don’t have diabetes.’
And she’s like, ‘Well, let’s do some tests.’
And I said, ‘Well, how about this? How about I leave, and then I report you to the board, because you’re trying to give me a diagnosis that I know I don’t have.’
Some places where you think that you don’t get stigmas, you actually get the most stigmas. I think about my place in my community, and they are just the most welcoming people that I think I’ve ever met. And I think it’s because, you know, we come into a lot of stigma.
We have people who don’t think that we should be able to love who we love, and they don’t think that, you know, we should be able to fly our flags. We have a lot of stigmas inherently just because of who we are.
When you add in health situations, I think that they’re like, ‘Oh, okay, well she has this.’ Sometimes they ask me if I mind talking about it, because you know, they want to learn. Maybe they have a grandmother who has it and so they want to compare symptoms.
Pet-spiration: Taking Inspiration from All Creatures
I like being around my animals. I think that even whenever I have what are called bad days, that just being able to lay in bed and have them up on the bed with me, or laying on the couch and having my dog just laying next to me on the floor is good.
She can often tell when I’m not feeling well because she’ll sniff me and then she just lays down on the floor. And if I start to move in a little bit of pain, she sits up and looks at me to make sure that I’m okay.
It’s weird — in the last year, she’s become completely deaf and her attitude of life has not changed. She’s still the same honoree dog that she’s always been, so I like to think that I get some of my mood changing attitudes from her because she’s completely lost everything that she loved and she’s still happy.
I’m thinking sometimes I need to think about stuff like that: It’s not something that I did. I didn’t cause it. It just happens. I think sometimes the way that you think about things can make you feel a little bit better or a little bit worse.
For me, whenever I get into the pool, dog paddling works well for me doing the backstroke or the breaststroke. You have to find that type of thing that works for you. And mine just came because I was watching my dog swim one day and he felt better. And I was like, ‘Huh, okay, this doesn’t hurt as bad as the other stuff.’
And then when I got out of the pool, I realized that I didn’t hurt as much as I did when I got in.
Finding an Arthritis Community
Like the Arthritis Foundation here in Houston, when I first found out I had arthritis, I joined them and I was active in a lot of their events early on. I found a rheumatologist who really cared and really understood and goes as far as he can to keep checks on us.
I think just having a community around that understood when I first got it, so that I understood better, was really helpful. I think just having those kinds of people in your life is really good. It’s helpful to have friends and people in your community who really understand what you’re going through. There’s Facebook groups, and there’s online groups, and even the Facebook groups are really supportive when it comes to arthritis.
The Wellness Evolution Podcast
The Wellness Evolution podcast, produced by the Global Healthy Living Foundation, brings together a diverse community of patients and health care providers to explore the relationship between health and wellness, featuring episodes on mindfulness, deep breathing, chronic illness, and mental health. Listen now.
