Arthritis changes your life. For some people it may only be a small disruption but for many people getting diagnosed with a form of arthritis becomes a turning point in their lives, forever separating the years into “before” and “after” arthritis.
“One of the biggest mistakes I made at the beginning, when I was first diagnosed with rheumatoid arthritis in my early twenties, was not realizing just how much this disease was going to change everything in my life,” says Alison Marie, 54, a mom of three in New York.
“I wish I had known that even though I was in pain then, that those were going to be my golden years. I would have travelled more, done some extreme sports, and run with my kids more,” she says. Over the next two decades, she would go on to have two hip revisions, four femur surgeries, and a total hip, femur, and knee replacement. “If I had known how much time I would spend recovering and in physical therapy, I would have spent more time ice skating, hiking, and dancing when I could,” she adds.
But it’s not just the physical part of life that changed for her. Everything — including her diet, travel, mental health, family, finances, relationships, and even her life dreams and goals — has been affected, she says. “This journey has often been hard but I’ve learned a lot along the way and I persevere and do the most that I can do every day,” she says.
Alison echoes the sentiment a lot of people shared with us about how their arthritis diagnosis changed their lives: a little bitter, a little sweet, and a lot of change.
Arthritis Changes Your Relationship with Your Body
Arthritis makes you paranoid
“I was so surprised when I was first diagnosed with arthritis but now I’m actually more surprised when an ache or a pain isn’t related to my arthritis. It makes me question every twinge in my body. Like, does my chest hurt because I’m getting a cold or is it arthritis in my ribs and now it will hurt to breathe for the rest of my life? I’m so paranoid about my health now.” — Kennidee T., 17, Payson, Utah
You never know what is arthritis versus what is an injury
“One day I woke up and my hand was swollen and painful like I’d punched something and all I could think was that I’d managed to hit the wall in my sleep. Eventually I was diagnosed with psoriatic arthritis and I got used to just dealing with random pain. So one day when I got home from work and my ankle was all swollen and painful, I was like ‘Well, here we go again’ but it turns out I’d actually sprained it really badly playing basketball and I spent a week walking on it and making it worse before my wife made me go in and get it checked out. I feel like I can’t trust my body to tell me when it’s hurt.” — Justin M., 40, South Africa
You may actually worry less now
“Before I was diagnosed, I was kind of a hypochondriac. Every time I got hurt, I was sure it was broken, every cold I thought was pneumonia. But then when I got some of the worst news of my life — that I have lupus, a debilitating chronic illness that could even kill me — I stopped worrying as much. It was like I finally had the bad news I’d been dreading all my life and now I know I can deal with the worst.” — Anjanel P., 31, Hialeah, Florida
You become an expert in anatomy
“I never even took anatomy in school but now I’m an expert in joints. I can tell you everything about how they work to the difference between ligaments and tendons to what synovial fluid is. Reading up about it has helped me feel more in control of my diseases [osteoarthritis and gout].” — Coop S., 58, Corpus Christi, Texas
You have to be a scientist of your own body
“There’s still a lot that science doesn’t understand about rheumatoid arthritis and autoimmune disorders, which means there can be a lot of trial and error. A lot of times I just throw up my hands and say ‘I don’t know!’ Why did I get RA and my twin sister didn’t? Why does dairy bother me, but not sugar? Why do I respond so much better to one drug but not another in the same class? But it’s important I pay attention to these clues to help myself.” — Mary R., 55, Spokane, Washington
You’re treated like you’re fragile
“Even when I am having a good day and am able to go to school everyone treats me like I’m glass and I’ll shatter if I do anything. My gym teacher makes me sit out so much because he doesn’t want to be responsible if I get hurt.” — Emma W., 15, New York
Arthritis Changes Your Relationships with Others
You’ll have to spend a lot of time educating
“There’s an astounding amount of ignorance about arthritis and treatments. I spend way more time than I ever thought I would educating people — especially my family and friends — about what it is, the effects, the treatments, the symptoms, the tests. And at least half of the time someone will say ‘Oh, I think I have that too!’ It would be funny if it weren’t so frustrating.” — Mary
Be prepared for people not to believe you
“I have sarcoid arthritis along with sarcoidosis and because I don’t look like what people think of as a ‘person with arthritis’ I often have people accuse me of lying or making up my symptoms for attention. I’ve even had doctors suggest it’s all in my head even though I have actual organ damage.” — Keesha B., 18, Atlanta, Georgia
It makes you want to help others more
“When I was first diagnosed and struggling to come to terms with what my life was going to be like now, a friend introduced me to Chronically Awesome, basically a support foundation for people with chronic illnesses. I started working with them a little bit and it really helped me put things in perspective. Now I’m involved in a bunch of charities and support groups. It makes me feel better to help others feel better and I never cared like this before lupus.” — Anjanel
Dating becomes a totally different game
“I used to love scrolling through dating apps but after being diagnosed with reactive arthritis and probably some other autoimmune stuff, hook-ups are off the table. On one hand, I really want a girlfriend who can understand me and will stick with me through this but on the other hand I feel really bad for people who have to be in a relationship with someone with arthritis because they have to become caretakers. On what date do you even bring that up?” — Johan S., 22, Berlin, Germany
Sex life? What sex life?
“Having sex during a [rheumatoid] arthritis flare-up is so tricky. Certain positions are impossible because they hurt. Pain is a major mood killer. Swelling makes me feel super unattractive. And — bonus! — being on biologics means I’m more vulnerable to infection. So, unfortunately that means sex is often off the table. I’d feel bad about it except most of the time I’m too tired to care.” — Yadira L., 27, Mexico City, Mexico
You may lose some friends
“No one knows what to say to me anymore. My best friend — the one who I’ve known since I was 4 — told me that ‘everyone has problems in life’ and I need to accept mine without complaining so much. Another friend told me he was sure I’d get better soon, which didn’t help at all. But at least they’re still talking to me. So many friends have just ghosted. I can tell I make them uncomfortable.” — Johan
You find out who your real friends are
“I have one friend who always keeps our Snap streak no matter what and she’s always texting me and making sure I’m up on everything that’s happening. It means so much to me and makes me see what a true friend she really is.” — Emma
You’re going to meet some amazing people
“In my decades of treatments I’ve been blessed to meet so many smart, kind, generous people who have gone out of their way to help me. This includes my medical team of doctors and nurses but also my physical therapists, medical aides, X-ray techs, neighbors, my kids’ teachers, and so many others. It’s helped me see how many good people are in the world. I’m so grateful for them and I wouldn’t have met them if it hadn’t been for the arthritis.” — Alison
You finally have something in common with celebrities
“When Selena Gomez had a kidney transplant due to her lupus, I’ve never felt so close to someone I’ve never met. And because I am the only person my friends and family know who has lupus, they started asking me all these questions. I became the local ‘expert’ on Selena Gomez, haha!” — Anjanel
Arthritis Affects Major Life Stages
Taking care of your period is next-level difficult
“I got my first period when I was 13, right before my JA diagnosis, and it was pretty light so for the first year I only used maxi pads. But eventually I decided I wanted to use tampons. So not only was I trying to figure out how to use a tampon for the first time — which is hard enough — but my hands and fingers were so stiff and swollen that I just couldn’t get the right angle. I cried so much. I had to give up. I can’t use tampons! Do you have any idea how much that sucks?” — Kennidee
If you want to have children, you have to plan for them
“Before lupus, I lived a pretty spontaneous ‘just see what happens’ lifestyle and my husband and I figured we would have kids some time and when it was right, it would happen naturally. One of the hardest parts of my disease has been accepting the fact that I might never be able to be pregnant because pregnancy can make lupus worse or I’ll have to take special care because of medications and treatments.” — Anjanel
You’re a different parent
“I wasn’t diagnosed with fibromyalgia until after my second child was born so I can compare what I was like as a mom before and after my illness. It’s night and day. At first I felt really bad that I couldn’t be the energetic outgoing mom my first son had for my second son but I’ve realized that my second one gets a lot more snuggles and undivided attention than his older brother did at the same age. I’m not a worse parent. I’m just a different one and that’s okay.” — Jeanette F., 36, Boise, Idaho
Arthritis Changes How You Exercise and Play Sports
If you don’t move then you can’t move
“Stiffness was one of the first signs of my arthritis but I’ve been surprised at how quickly I can go from ‘kinda stiff’ to ‘I guess I’m in this recliner for the rest of the weekend.’ When my arthritis is bad, I have to stand up and move around at least every hour or I’ll get so stiff I can’t. Waking up is the worst.” — Mike E., 27, Vancouver, Canada
I’m more fit than I’ve ever been
“‘Motion is lotion’ is something my doctor has told me about 100 times and after my [inflammatory] arthritis flare-ups got really bad I finally decided to listen. I was never an athlete before arthritis and avoided the gym but I was in so much pain I figured anything was worth a try. I took up hot yoga, lifting weights, and swimming. I found that I felt so much better I started to look forward to my daily workouts and hated to miss one. About a year ago I added in 15 minutes in the sauna and that’s made a huge difference too. I have less pain and flares now but ironically I’m also the fittest I’ve ever been in my life.” — Charly M., 41, Mesa, Arizona
You have to get new hobbies
“I was ‘a runner’ for years. It was a big part of my identity, my social group. Now I can’t run anymore and that’s been a really hard adjustment. Recently I’ve started doing weight lifting because I can do it sitting down if I have to. Maybe soon I’ll feel like ‘a weightlifter’ and that will be my new thing.” — Coop
Everyone is going to tell you to start swimming
“I don’t know what it is about hearing the word ‘arthritis’ that makes everyone from your doctor to your spouse to the random guy at the bank tell you to take up swimming but I’m here to tell you it’s true. I understand it’s low-impact exercise, but I happen to hate swimming.” — Coop
Arthritis Changes Your Daily Routine
Preventing a flare becomes your primary goal
“Everything I do, eat, drink, wear, etc., isn’t about what I want or enjoy, it’s become solely about preventing my next arthritis flare up because they’re so crippling. Everything I do I start with ‘Is this going to make my arthritis worse?’ For instance, it’s not worth eating a gourmet doughnut if it’s going to mean I can’t walk for the next week. I can’t remember the last time I had gluten.” — Missy C., 24, Indianapolis, Indiana
Little things can make the biggest difference
“I am so in love with my can opener. I know that’s a weird thing to say but I finally got an electric one and it’s made cooking with my osteoarthritis so much better. I’ve even named it: Stan. Stan the can is the man! When I first started having problems with my hands it was a point of pride for me to just gut through it but now I’m more gentle with myself and I love all those little tools they have for people with arthritis. Don’t make things harder than they need to be.” — Angela S., 56, Seattle, Washington
Falling out of bed isn’t just for ‘old’ people
“I was diagnosed with juvenile idiopathic arthritis when I was just 14 years old. It started as a backache but soon many of my joints were painful. But the moment I realized how serious having arthritis was one morning when I woke up and literally couldn’t get out of bed. Everything hurt and no matter how I tried to sit up, it didn’t work. I finally had to roll out of bed and fall on the floor where my mom found me. I repeat: I was 14 and needed one of those ‘Help, I’ve fallen and I can’t get up’ alarms.” — Kennidee
Typing is out of the question during a flare
“I never realized how much typing is a part of life until I couldn’t do it anymore. I’d been dealing with hand pain for years so when I was diagnosed in 2015 with osteoarthritis I wasn’t surprised. I figured I’d need tools to help open jars and do up zippers but what really surprised me was how much harder using technology is for me. Computers and phones all use some type of typing. I have to use my knuckles to type and it’s really slow. I think it might be making my finger fuse into a curved position too.” — Sandy A., 67, Carlsbad, California
There’s weird stuff in your fridge
“I have to take biologic injections for my rheumatoid arthritis. My insurance ships them to my house and I keep them in the fridge until it’s time to take them. The other day my friend was looking through my fridge for a snack and was like ‘Why is there a cardboard box of syringes in here? That’s weird.’ He just shut the fridge and walked away without getting anything to eat.” — Missy
Hair has to be functional before fashionable
“After having long hair for years, I recently cut my hair really short. My rheumatoid arthritis made it so I could no longer manage all the different bottles — shampoo, conditioner, oil, gel, dry shampoo — and styling tools my old hair required. It’s taken some getting used to but it’s so much easier to deal with now. I’ve gotten a lot of compliments but honestly beauty has taken a backseat to practicality.” — Mary
You’ll try things you would have never considered before
“I used to think holistic stuff like acupuncture and essential oils were all garbage but since getting diagnosed and being in chronic pain I’m much more open to trying things even if they seem ‘out there.’ If it helps, it helps, and I don’t question it. I’ve actually found a lot of relief from weekly acupuncture and certain oils.” — Amber S., 39, Chicago, Illinois
The sun is no longer your friend
“No one warned me about the photosensitivity that can be a side effect of some of my medications. It took getting badly burned for me to figure it out. I used to love sitting out in the sun and now I avoid it at all costs. I try and keep all my skin covered and carry mineral sunscreen with me everywhere.” — Claudia K., 46, Denver, Colorado
Leggings are life
“I was never a big fashionista but when my joints really hurt, wearing anything other than pajamas is just too difficult. My solution was to buy some cute leggings and joggers that I can pull on with some flowy tops. Basically pajama clothes. There are no ties or zippers to worry about and they’re so comfy that I can sleep in them too. Which I do… a lot.” — Amy P., 36, Cheyenne, Wyoming
Arthritis Changes Your Work and Money
You might need a career change
“Having psoriatic arthritis has meant changing jobs to one where I can work from home more even though it pays less. I worked in accounting and the commute combined with sitting at a desk all day was killing me. I loved my job but it was customer-facing so I had to be in the office every day. After my diagnosis I took a different job in finance. I don’t love it but it’s okay and my boss is really flexible so I can work around my PsA flare-ups, which is the most important thing right now. I can’t lose my health insurance.” — Amber
You have to rethink your finances
“I’ve had to spend more money than I ever thought on arthritis. It’s not just medications and doctor’s appointments. I spend money on special creams, heated blankets, adjustments for my car, a headset for my phone, and a million other little things. Then there’s the scary fact I might end up disabled, so I should put more money into savings. All of those factors mean I’ve had to totally redo my budget and live a much different lifestyle.” — Amber
You might be able to write your mattress off on your taxes
“I had to get a special mattress because of my osteoarthritis. It wasn’t cheap but I found out that it qualifies as a medical device so I can write it off on my taxes. It’s one of the few real perks of arthritis. But seriously, make sure you are deducting all your medical expenses.” — Daniel L., 60, Allensburg, Ohio
Everyone’s going to try to sell you stuff
“If I had a nickel for every time someone has told me that their CBD oil or essential oils or health shakes or vitamins would cure my arthritis, I’d be rich. I don’t know what it is about arthritis that brings out MLM [multi-level marketing] salespeople but I’ve considered putting a ‘no soliciting’ sticker on my shirt.” — Daniel
Arthritis Changes Your Mood and Mental Health
Arthritis is stressful and stress makes arthritis worse
“I call it the vicious cycle of arthritis. Everything about arthritis is stressful but feeling stressed out can trigger an arthritis attack. So I’m always worrying about… not worrying.” — Mary
Jealousy can be intense
“I look at my friends who are just living their lives, going to uni [college] and dating and having fun, and I am stuck in bed, in pain, with no energy. I feel so jealous it makes me sick. I don’t want to waste time asking ‘why me’ but really, why me?” — Johan
It changes your sense of humor
“I used to be one of those guys who just kind of smiled when someone told a dumb joke but now I just want to laugh and I don’t care what it is. The other day I was talking to my doctor about arthritis in my lumbar spine [due to ankylosing spondylitis] and he said ‘Yeah, it’s a real pain in the butt!’ I laughed for 10 minutes straight about that. I laughed so hard, he couldn’t stop laughing either. So much of my life is pain that I’ll take humor wherever I can find it.” — Mike
Therapy becomes a necessity instead of a nicety
“One of the things I wish someone had told me when I was first diagnosed was to make finding a good therapist priority number one. While I was going through testing and trying to get my symptoms under control my mental health went into a tailspin. I was so depressed but I never mentioned it to my doctors because it seemed like the least of my problems. Having a chronic illness means mourning the loss of your old life and my therapist is helping me work through that now.” — Claudia
It can make you really lonely
“I’m still in high school and when I have a flare-up of my [juvenile] arthritis my mom has to call the school and excuse me and get my homework and then take it back once I’ve finished. It’s almost likely being half homeschooled and I really miss seeing all my friends and teachers. I never thought I would say that I miss school but I do. I’m so lonely.” — Emma
Arthritis Changes How You Eat and Drink
You realize your weight is about so much more than looks
“I’ve been a big girl my whole life but it never bothered me. I liked how I looked. It wasn’t until I was diagnosed with arthritis that I started to see my weight as a real health issue. All my doctors told me I need to lose weight so I started a low-carb diet and even just losing a few pounds has helped with the pain. It’s motivated me to stick with it.” — Keesha
Alcohol is more trouble than it’s worth
“Drinking wine makes my rheumatoid arthritis flare up worse than anything, with beer in second place. But even if it didn’t, I’m not supposed to drink with some of my medications. I went from having one to two drinks a day to being almost completely abstinent. The only time I’ve drank in the past year was champagne at my sister’s wedding and it wasn’t worth it the next day. I also have fibromyalgia and chronic mono and don’t need anything else making me tired.” — Claudia
Netflix and UberEats are your saving grace
“On days when it feels too hard, I order delivery and camp out with a favorite movie. I never got food delivered before because it always seemed like an unnecessary expense but now I see it as an indulgence. I’m not rich, but it’s one way I pamper myself and pampering yourself is important with arthritis!” — Angela
Arthritis Changes How You Think About Doctors and Health Care
Getting an accurate diagnosis is harder than you think
“I was first diagnosed with dysautonomia, then mast cell activation syndrome, then some type of inflammatory arthritis along with Ehlers-Danlos syndrome and chronic fatigue. My medical chart is an alphabet soup and my doctors still aren’t sure what’s wrong. I used to think that you either had arthritis or you didn’t, but there are so many different kinds and a lot of them don’t have a definitive test. I’m going on nearly 10 years of trying to get a real diagnosis but in the meantime we’re just treating each symptom as it comes up.” — Amy
You get comfortable with uncertainty
“I was diagnosed with reactive arthritis after a really bad flu. In many cases reactive arthritis goes away on its own but for some, it stays and turns into a kind of inflammatory arthritis. It’s been two years since the initial infection so I guess I’m in the latter group. All my tests have come back negative but I still have pain, swelling, and stiffness. My rheum is leaning toward seronegative rheumatoid arthritis but I still don’t have an official diagnosis and it’s possible I’ll never get real answers. At first that drove me crazy but I’ve learned to let it go. There are actually a lot of things in life that we never get answers for and freaking out doesn’t change that. Arthritis has changed me to be a much more zen person, to focus on dealing with what’s happening in the present rather than worrying about the future.” — Charly
Use Our ArthritisPower App to Manage Your Arthritis
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