My diagnosis is complicated. Since day one, doctors have been telling me that I’m an unusual case. I have severe rheumatoid arthritis, and I haven’t yet had a significant response to any of the medications I’ve tried, except prednisone. I only have one medication left to try, and then I am out of treatment options.
The disease affects almost every joint in my body and has attacked my organs as well. At least some of my joints flare every day. There is always pain, every day.
That might sound depressing, and some days it is. But there is still a lot of good in my life, and there are a lot of things I can do to make the best of the life that I’ve been given. To live well, despite the challenges that RA brings.
It sounds trite. And while a positive attitude won’t cure anything, it will help you cope a whole lot better with whatever life throws at you. I work hard at finding the positives in every situation, and over time that becomes a habit.
Adapt, don’t stop doing, the things you love
Before I became sick, I was a gym junkie and fitness nut. Running 5 kilometers every day and doing back-to-back group exercise classes at gym was my idea of fun. RA took all of that away, so I had to find substitutes. I can’t run anymore, so now I do 30-minute spin classes on good days, and yoga-based stretch classes. Instead of going to the gym every day, I try to get there three times a week. It’s less, but I am still doing the things I love. I just had to learn to do them differently.
When RA first hit, it hit hard. I was in agony, barely crawling out of bed. At first, my impulse was to lie down and wait for the pain to go away. And then I realized it was NEVER going away. So if I were to have any kind of life at all, I was going to have to make peace with the pain somehow. Accept it. Live with it.
So, I stopped fighting the pain and started trying to work with it. I stopped avoiding activities and turning down invitations because they might cause me to hurt more tomorrow. I realized I’m going to hurt anyway, so I may as well try to get out and do something I enjoy.
Have realistic expectations and be proud of yourself
I used to be married, have two toddlers, and work in a professional, stressful job. I loved my life and thrived on getting 25 hours out of every day. My life is very different now. The husband is long gone, along with the career, and those toddlers are teenagers. But the biggest difference is now I set myself realistic goals. I don’t try to be the person I once was, and I don’t beat myself up about no longer being able to do the things I once could.
Chronic illness can batter your self-esteem and hit you at the very core of your identity. I was a high achiever, and I didn’t want to change. At first, I tried to keep everything moving, keep doing all the things I used to do. Ultimately, that resulted in me getting much sicker and having a complete breakdown.
It took time, but now I accept that I will never function at that level again. The old rules no longer apply, and I’ve set more realistic goals. Ones that are achievable, even if to the outside world I don’t seem to be doing much. What other people think doesn’t matter. I’m realistic about my capabilities, and I’m proud of my achievements. Few people understand how hard it is for me to get out of the house to buy milk some days. So, I don’t wait for someone else to tell me how awesome I am … I tell myself. I know that I do hard stuff, every single day, and I give myself credit.
Don’t beat yourself up, and do allow yourself to rest when you need to
Of course, there are days when nothing but rest is possible. Some days the pain is too much, or the fatigue is overwhelming or depression has too tight a grip. When truly all I am capable of is dragging myself from my bed to the couch, and making it to the bathroom is an achievement.
On those days, I give myself a break. I don’t beat myself up anymore. This isn’t my fault. I didn’t cause this, or ask for it in any way, and I don’t blame myself. Sometimes stuff just happens, and there is no reason. Getting angry or overthinking it will only cause more stress and probably intensify the flare. So I breathe, and tell myself this too shall pass, and give myself permission to cry and be sad if I need to. And rest.
It’s hard to maintain relationships when you’re chronically ill. I spend a lot of time alone, and most of my old friends have drifted away.
But when you have a chronic illness, it’s quality, not quantity, that counts. I have a few very important friends, and I work hard at keeping in touch with them. They understand that they will have to come to my house a whole lot more often than I will get to their house, or we’ll have to talk over Skype or Facebook more often than face to face, and I love them for it.
Another benefit of going to the gym is keeping in touch with the real world. Just seeing people, making small talk for a few minutes, goes a long way to helping me counteract the isolation that being sick brings. The social element of the gym is just as important as the physical exercise. Keeping in touch with healthy people is important, even though sometimes I feel like I live on a completely different planet from them. Spending time talking about normal things — kids, school, work — rather than MRIs, medications, and lab work goes a long way toward making life feel a little more normal, and not being focused on illness all the time.
Live in the present
I work hard not to worry about things I can’t control, and I live firmly in the present. I don’t like thinking too much about the past. Obviously, life was better when I wasn’t sick. I went from having it all to losing it all in a matter of months. But I can’t dwell on that. That’s the past and I can’t change it. Similarly, I don’t look very far into the future. My prognosis at this point is downhill. That’s not negativity, that’s just the truth. I don’t try to deny that, but I don’t spend all my time focusing on it either.
Of course, I retain hope, but tempered with a strong dose of realism. And in the end, right now is all any of us have. No one is promised tomorrow. So, I stay present, living very firmly in the now. I won’t allow one possible future of ever-increasing disability to spoil my todays.
Find people who understand
A lot of days I physically can’t leave the house. I am in too much pain, and I can’t do anything about that. I am part of a few Facebook support groups, and they can be a godsend in terms of finding people who understand what you’re going through. It can take time to find a group that’s a good fit, but having people who understand you, and with whom you can laugh and cry even if you’ve never met them face to face, can be a great source of support.
Eat healthy and follow the treatment plan
I eat a healthy diet. I try to keep my weight within the realms of normal, much as some of the medications seem to conspire to make me gain weight! I am compliant with my doctor’s orders, and I take my medications as prescribed, including my opioid pain medications. I use heat and ice and exercise and stretches and meditation and mindfulness techniques to manage pain.
The bottom line
I remain grateful for all the good that I have in my life. And there IS a lot of good! I try to put more energy into the good things. Most of all RA has taught me not to sweat the small stuff, and to appreciate the things that really matter. And for me, that’s the time spent with the people I love.
All of this took me a long time to figure out. In the beginning, I didn’t want to accept any of it. But in time I realized that while RA is a life-changing diagnosis, it doesn’t have to be a life-destroying one.
Neen Monty — aka Arthritic Chick — has been battling with RA for the past 10 years. Through her , she’s able to connect with other diagnosed patients while writing about her life, pain, and the beautiful people she’s met along the way.