by: Kittie Rayborn’
There are lots of articles and lists out there about what we want people who don’t face chronic illness every day to know. Here are my ideas about what I want others who do have a chronic illness to remember.
1. You can live a full, happy life. It may not look like everybody else’s life that you’re seeing, and that’s OK. Figure out what works for you and makes you happy, and reevaluate regularly. Remember (or find) activities you enjoy and do them! If you were an athlete, you may not be able to play your sport of choice at the level you once could, but maybe you can help coach a children’s team, or get involved in a fantasy league. Or try a new hobby you hadn’t considered before. I got into adult coloring books (no, not nekkid pictures — just detailed designs meant for grown-ups!) and it’s very relaxing and not physically taxing (unless my hands are cramping that day). Try something you never thought you’d do — you don’t know what you’ll find that’s super fun.
2. You are worthy of, and can find, a rewarding romantic relationship. Dating isn’t easy when you’re dealing with a chronic illness. It’s easy to believe you’ll never find someone who can accept — and love! — you the way you are. But it is possible, and you deserve it. Be open with potential romantic partners about your condition and how it affects your life.
On my first date with my now-husband of almost 10 years, I mentioned that I have fibromyalgia and it affects me every day. (He asked me to spell it. Twice.) I told him that if we dated, it would affect him too, and I left it at that. By our second date he had Googled fibromyalgia and asked intelligent questions about my symptoms, treatments and activity levels that work for me. I answered honestly and he told me he could handle it and would support me however he could for as long as we saw each other. He has never broken that promise, though I’m sure it’s been tempting at times. Like when we had Astros baseball playoff tickets and I was flaring so bad I couldn’t get out of bed, and he refused to go with someone else and showed up with Starbucks and the Sunday paper and a funny movie to spend the day with me on the sofa.
Your dating pool is by necessity limited to strongly empathetic individuals, but the good news is that those people make great partners in every way. Don’t ever settle for someone who treats you as “less than” or acts like your limitations are an imposition. Move on until you’re treated like you deserve to be.
3. You can still contribute in a meaningful way. Your energy and pain levels may dictate how much you can do at any given moment. But that doesn’t take away the fact that you bring so much to the world — you have unique talents and gifts nobody else can offer. Don’t stop sharing who you are and what you have to give just because your body isn’t cooperating.
4. People aren’t always trying to act like assholes. When you have an invisible (or visible!) illness, it can be hard to relate to those who don’t. They may not believe you’re in pain because they can’t see an injury. They may not understand how exhausting it can be to just take a shower. They may make uneducated recommendations about treatments that worked for their uncle who has an entirely unrelated condition or say you’d feel better if you only exercised more, or lost weight, or cut out gluten. But in general, I believe they mean well and they’re trying to help. Try to accept their comments in the spirit in which they’re intended and absorb the positivity they’re trying to give you. (But when you find a truly mean-spirited bully who uses your disability to deliberately hurt you, you have my blessing to give them a verbal smack-down like they’ve never seen!)
5. Don’t take yourself — or your condition — too seriously. When you’re in pain all the time or dealing with countless other unpredictable and often miserable symptoms, it’s easy to look at the challenge almost as a job — the schedule adjustments, the medications throughout the day, figuring out how many spoons you have today. If you can laugh at yourself, your condition and other people, it’s much easier to bear. “Yeah, I gotta cancel happy hour today. That darn dragon is trying to scorch its way out of my lower back again!” is much more fun (for you and your friends!) than “I’m so sorry, I’m the worst friend ever, I just can’t make it, my life sucks so bad.”
Love and light to you all, my brothers and sisters. Remember that you have a condition, but it doesn’t have to own you.