Something was seriously wrong with me. I was dizzy all the time, my chest muscles felt like they were being pulled in five different directions, my jaw ached, my hands looked puffy like Mickey Mouse’s gloves, and I cried out in agony any time my bed sheets simply brushed my toes. I went to the doctor and did some blood tests, but I ignored her pleading phone messages to call her back right away.
You know when it’s bad news, news that will change your life forever. I knew.
Yet I chose ignorant bliss, not realizing or caring that every second I didn’t treat my new rheumatoid arthritis diagnosis, my disease was progressing and possibly permanently damaging my joints and/or organs.
That was a huge regret: waiting so long to get help I desperately needed because I was scared and couldn’t deal. If I could go back to that time, I would definitely scream at myself, “Pick up the darn phone!”
This year marks my 10-year anniversary of having RA. Congratulations to me! I believe the appropriate gift for this milestone is something “tin” but I already have tinnitus from God knows what and that’ll suffice. So no need to send a gift for my RA-nniversary (see what I did there?).
Instead, I’d like to give a gift to any newly diagnosed arthritis patient who is terrified of what’s to come. The wisdom my fellow arthritis warriors and I have learned over the years that might save the newbies some heartache and pain.
I’ve been on this chronic illness journey for a decade and though I’m still evolving and making mistakes, I’ve learned a lot for sure. And so have my friends in the rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis groups I follow on Facebook. I asked them what they wish they knew way back when, and here’s what we came up with.
1. Inflammatory arthritis is not a death sentence
“Don’t panic,” says RA patient Rhonda Hall. It’s hard not to, because if you Google “RA and life expectancy,” you’re going to freak yourself out. It’s true that there are articles that claim RA can shorten your life by an average of 10 to 15 years. And I remember reading one study that said one-third of patients die within the first 10 years of diagnosis and sobbing. It really stuck with me all these years. But three things are important to know here:
- You could get hit by a bus tomorrow;
- Every RA patient’s journey is different, and how it affects you depends on a multitude of factors, from smoking to obesity to family history to disease progression; and
- One-third of patients could die within 10 years because they might have been diagnosed at 80 years old!
If you take your meds, live a healthy lifestyle, get enough sleep, exercise, and eat right, it’s possible to have a very long life with RA. My best friend’s dad, known to all as Dickie Donuts, has had RA for 23 years, is 86, smokes like a chimney and is still going strong. “Relax, it’s not the end of the world,” insists Sarah T., who also has RA. “I’m at 10 years diagnosed and I feel amazing!”
2. Ask questions
Getting a diagnosis of RA or another kind of inflammatory arthritis is definitely not the end of the world, but RA and all of its offshoots (or comorbidities, as docs call them) are very serious. Just how serious? I didn’t really know at first. When I finally went to the doctor and she told me I had RA, I was in a daze and walked out of there really having no clue what my disease was exactly.
I wish I had paid better attention and asked more in-depth questions about my disease. We often feel rushed at doctor’s appointments and can walk out totally clueless. Then we get home and Google and scare the shit out of ourselves. So, I would tell my old self, “Take your time, leave no stone unturned.”
3. Don’t hide your emotional pain, confront it
You’re already in physical pain but what about what’s going on in your head and heart? Don’t bury those emotions for a long time; get them out of your system. “It’s okay to have lots of emotions, be angry,” says RA patient Darren S. “Okay, now that you’re done being angry, find the strength to accept it. This comes with a warning. It’s going to be difficult to accept. For me, the turning point to tackling this was accepting I have RA.”
As they sang in “Free to Be You and Me” (hi, I’m 50), “It’s alright to cry.” Having a chronic illness is a big deal and “it’s okay to grieve,” says RA patient Becky L. Samantha H., who also has RA, would tell her newly diagnosed self “to give myself self love because it’s okay.”
4. Don’t be a hero
“You’re not invincible,” PsA patient Sara D. wishes she could tell her newly diagnosed self. You can live a very active “normal” life — but respect the disease.
“You’ll have good days and not so good days,” says PsA patient Tracey S. “Don’t overdo it.” Slow down and rest when you need to. After you accept you have RA, “now listen to your body,” adds Tracey.
“Every small step forward is an accomplishment,” says Dave, who has AS. “I needed to adjust my expectations to suit my reality instead of burning the wick at both ends trying to hold on to my ideal life trajectory.”
5. Doctor shop
This disease is not a one-night stand, it’s a committed relationship. Because there is no cure for RA, you will, as of now, likely be dealing with your diagnosis… forever. Because of this, you have to love your doctor. Don’t waste time seeing your GP for a long time. Find a rheumatologist ASAP but be picky. At the minimum, your doctor should have good beside manner, listen to you, take as much time as is needed to explain things to you clearly, and have a nice, competent staff who fills your prescriptions expeditiously. “It’s worth it to drive farther for the best doctor,” says Donya M., who has PsA.
6. Research your meds and *take your meds*
You might be prescribed a cache of medications with names that have lots of consonants, and you have no idea what any of them do. “Educate yourself,” says Samantha.
If you’re like me, you will be so overwhelmed that you do absolutely nothing. At first, I didn’t take my methotrexate because I was devastated that I had to take a medication I merely heard through the grapevine was poison. Once I got over that, I skipped my folic acid for a long time because I didn’t know what it did and decided myself it wasn’t necessary because I’m a doctor. Oh wait, no I’m not.
I didn’t know it may help with nausea or may help prevent your hair from falling out because I never asked and I never looked it up. I also just couldn’t get used to taking pills every day so I skipped all of them randomly. If I had to do it all over again, I would have bought a simple pillbox on day one. Nobody gives the lowly pillbox the credit it deserves. It saves lives.
Also, I wish I did not listen to those well-meaning friends who told me methotrexate was toxic and not to take it. They were wrong and had no idea what they are talking about. If you want to have a good quality of life and live longer (see # 1 above), take your medicine. (Takes out megaphone.) Eating certain foods or spices instead of taking medicine will not cure you.
“I wish I wasn’t afraid to start medicine as soon I was diagnosed,” admits John (not his real name), an RA patient. “Mine was found quite early but I did not want to start strong medicines.”
7. Don’t be scared to switch meds
I was doing great on eight pills of MTX for about eight years, when all of a sudden, my foot pain became so severe again, I could barely walk my dogs around the block. My doctor suggested going on a biologic but I was stubborn and petrified of injecting myself or getting infusions. So I suffered unnecessarily for an entire year, plus who knows what permanent damage I did to my joints during that time? I wish someone had told me from the very beginning, “When your meds stop working, move on to something else.”
I’m now on Remicade infusions and walking well again. Finding the right cocktail of prescriptions is key to your arthritis health, so keep experimenting until you feel good and don’t delay. “I didn’t realize how difficult it could be to find the medication that would work for me,” says Rayna W., who is on her fourth or fifth medication after being diagnosed with RA. “I’m on the last pill one. I’ve gone through all the others. Next step is injections or infusions.”
8. Get the best insurance you can
If I knew back then what I knew now, I would have saved my pennies for the best insurance plan. Your health is now one of your biggest priorities. You want the best care and the best meds and you don’t want to go bankrupt trying to stay alive.
9. Your relationships are going to change
That’s a fact. If you knew it from the beginning, you might be able to prepare for it better. When I first experienced symptoms, I’d just started dating someone. I was exhausted and in constant pain and the last thing I wanted to do was have sex. I was not a bundle of joy to be around. Not surprisingly, we broke up. If I had done my homework, I may have been able to explain what was happening to my body and salvaged the relationship.
It’s even more complicated when you’re already in the thick of a relationship. “I was terrified,” says Sarah. “I thought my then boyfriend would want to break up because I might be disabled at some point. But he’s now my husband.”
Truth is, some people just get weird around sick people. Can’t handle it. Don’t believe it. It could be someone close to you and their reaction will shock and sadden you. Like a close friend who’s mad you can’t hang out as much anymore because you’re fatigued or having a flare. Give yourself a pass — you can’t be a people pleaser when you’re in pain. “It’s okay to miss on social activities to take care of yourself,” PsA patient Brittany W. says she would tell her newly diagnosed self. “You can’t pour from an empty cup.”
Dave, who has ankylosing spondylitis, wishes he had weeded out the negative people and found his new tribe of arthritis warriors earlier: “I would have told myself to spend less time attempting to convince everyone around me I am really sick, and just focus on learning to cope with it. The most powerful thing I could do for myself was to develop the support of the community of people who truly understood what I’m living with instead of believing I could power through it on my own.”
10. Some change is good
When you’re first diagnosed, there is this horrible fear that life will never be the same again. That can suck but it can also not suck and be a positive thing. The whole “when life gives you lemons” situation. Your disease may knock you out in some ways but it also forces you out of your comfort zone. You can find new interests and hobbies to entertain you. AS patient Dave would have told his newly diagnosed self, “I will be strong enough to develop new purpose and to let go of my old ones enough to allow that development to happen.”
I’ll never forget my doctor telling me, “You’re never going to run a marathon.” Okay fine, maybe I can no longer run or jump, so I can’t run a marathon (no thanks anyway) or play my beloved tennis. So I became a gym rat. Before I was diagnosed, you couldn’t drag me to the gym with a tow truck. Now, I go every day, I love it, I’ve made tons of new friends, and I just bench pressed 65 pounds today.
11. You could be healthier than you’ve ever been
If you told me a decade ago that I would be pumping iron like Ah-nold and trying (and mostly failing) to cut down on carbs, Diet Coke, and sugar, I would have laughed in your face, then gone and eaten a hot dog. I definitely feared when I was first diagnosed that I would end up crippled sooner than later.
So far, knock on wood, it hasn’t happened and it’s because I learned midway through my illness that the more I exercised and the healthier I ate, the better I felt. Yes, there are days when working out is not an option because of a flare, and days when I stuff my face with strawberry cupcakes. But my motto, like that of so many of my friends in the Facebook groups, is, “Don’t stop moving.”
As one of my fellow RA friends says, “Eat clean, reduce stress, remove toxic people, and take care of you first!”
12. Have patience
In this era of instant gratification, it’s hard to wait for RA meds to work. They’re not pain pills; they’re not meant for instant relief. In some cases, like with methotrexate or biologics, they could take weeks or months to be effective. Right after I was diagnosed, I called my dad and wept about my seemingly unending pain. I told him I couldn’t take it anymore. He wasn’t an emotional man, but I’ll never forget when he told me, his voice cracking with emotion, “We won’t stop until we get you the right help.” One magical day three months later, my MTX finally kicked in and my pain vanished. For those newly diagnosed who can’t see light at the end of the tunnel, please do not give up. There are better days ahead.
13. Live life to the fullest now
So cliché but true, especially for the chronically ill. “Travel, hike, get involved in activities or your community. The day might come when you can no longer easily do those things,” explains Sharon D., who has RA. “Don’t put off doing the things you want to do.”
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