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what it feels like

rheumatoid arthritis: what it feels like

'you can’t just expect us to stay inside for two years while you go out and not pay attention.'

by emma jones

dec 2 2020

9 minute read

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what if feels like: rheumatoid arthritis

as a child, lene remembers her dad carrying her home from the schoolbus because she couldn't walk after a long day at school. david govoniclose

lene andersen’s father would carry her home from where her school bus dropped her off because it was too painful to walk. she was just four years old. even though her mother had a sense that something was wrong, doctors repeatedly told her she was crazy — eventually referring her to a psychiatrist. it would take five years before someone took her seriously when she advocated for help for her daughter.

rheumatoid arthritis (ra) is an autoimmune disorder in which a person’s immune system attacks the body’s tissues. this leads to inflammation and damage in the joints, pain, stiffness and fatigue. if untreated, the joints can “lock up,” resulting in difficulty walking and physical deformity. ra has also been known to affect the tissues in the heart and lungs, leading to a higher risk of premature heart disease.

healthing.ca spoke to lene andersen, a successful author and disability advocate, about her life with ra, the impact of covid-19, and her tips for friends and family on how to support a loved one with chronic illness during the holidays.

this interview has been edited and condensed for clarity.

what led to your diagnosis?

i got diagnosed a very long time ago. i first had symptoms when i was four years old and i was diagnosed at nine. although it’s gotten better in terms of diagnosis now, there’s still a really big lag [from the time people have symptoms to when they are diagnosed].

i can remember crawling from my room to the kitchen because i couldn’t put weight on my foot. my dad would carry me home from the school bus because by mid-afternoon i just couldn’t walk anymore.

my mother told doctors, “i think she has juvenile arthritis,” and they would say, “no, you must be crazy.” because they couldn’t figure out what was wrong with me, they thought something must be wrong with my mother, so they sent her to a psychiatrist.

over time the symptoms became more obvious and that’s what got me diagnosed — ra can play hide and seek at the beginning.

was there a treatment?

because i grew up as a child without treatment, there was really nothing doctors could do. at one point, they decided my hips were completely wrecked and that keeping them at rest would make things better, so i was in a body cast for a month. the idea was that the cast would help me walk again, but actually, i haven’t walked since. basically, the cast fused my hips.what they know now is that if you immobilize the joint, it’s going to lock.

i ended up being in a hospital bed for three years waiting for hip replacements. i got two hip replacements when i was 16, a power wheelchair and i went home and tried to live a fairly normal life. i haven’t walked since i was 14.

tell me about life as a child with ra.

growing up was very, very lonely. yes, once i got into hospitals for years and years on end, that was difficult, but even [outside of that] i missed a lot of school because i was sick all the time. and when i did go to school, i was different — i was bullied. it was a hard way to grow up. once i got to the hospital, i might make friends with other girls who came to the hospital, but nobody stayed more than about a month. it was very difficult.

i didn’t actually move out until i was in my early thirties. my parents were very supportive and patient, but there came a point where i really want to be on my own.

because i need help, one of the difficult things was finding an apartment. the waitlist to find an affordable apartment that has supportive services, like what i have, can take a more than 10 years.

i’m really lucky i live downtown — i can walk almost everywhere. it’s fantastic to be independent, especially now that we have accessible streetcars. the places i would go if there wasn’t a pandemic.

take me through a day in your life.

i live in an apartment where i have attendant care. we have personal support workers coming in to help me with things like showering, getting dressed, and making breakfast. they also come in for lunch to help with what’s called activities of daily living. in between, when they are not here, i work from home. i have my breakfast, i sit in front of the computer — probably much like you. in the late afternoon, i have a nap. a very important part of managing my pain and fatigue is to have about an hour and a half of lying down.

how is ra managed now?

now, there are the things that deal with pain from symptoms, called dmards ( disease-modifying antirheumatic drugs), [which work to slow the progression of joint damage and relieve symptoms] and then biologics, which attack the disease itself. for me, the biologics have literally been a lifesaver, and my miracle drug.

i say that i’m the worst case scenario of ra — i use a wheelchair, i have a disability and a lot of deformities — but, at the same time, i’m also the best case scenario because i found this medication that basically has enabled me to create the life i have now. i’ve followed my lifelong dream of becoming a writer and i’m living on my own in downtown toronto.

how do biologics work?

biologics work by suppressing any active inflammation. i still have pain and limitations because there’s permanent damage that was created by inflammation, but just not having active ra has been profound. although i have some fatigue, it’s not extreme, and it’s allowed me to push my disease to the back burner most days and focus on living my life.

how have improvements in these medications impacted your life?

because of medication, my ra is under control. i don’t like to use the r word [remission] because i’m superstitious, but i am very lucky to have experienced that for 15 years. having grown up in a time when you got a diagnosis for ra and within 10 years you were very disabled, i never thought i would be able to achieve remission in my lifetime.

one of the problems is making sure that people who are diagnosed understand the treatments. i think it’s really important to have conversations with your rheumatologist about what is what is possible and how you get there. there’s a lot of misconceptions about it being like osteoarthritis, which it is very much not. this isn’t something you just have to learn to live with.

how has the pandemic affected your life?

the biologics are immunosuppressant drugs — they work because your immune system is out of whack and overactive. so, one of the most effective ways to bring ra into remission is to suppress the immune system. not to the same level as, for instance, when you have a transplant, but it does put you at a higher risk for catching infection. i am very much in a high risk group and covid-19 has definitely affected my ability to do anything. for the first three months of the pandemic i didn’t leave the house.

when you have a disability and illness as long as i have there are always layers of stuff. four years ago, i ended up in the intensive care unit (icu) with complications from the flu. i was on a ventilator for two weeks, and had to have a tracheotomy. as part of that, i developed post-traumatic stress disorder (ptsd). this pandemic pokes at all that. then when you see people not wearing masks…

it has been very scary, but also frustrating. i’m lucky that i live in an area where there’s really high mask compliance. there seems to be this whole messaging of, ‘we still need to live our lives and people who are high risk should stay home.’ first of all, we need groceries too. secondly, people who are high risk — which is a much larger group than most people think — they can’t be expected to stay inside for two years, while everyone else goes out. i think ‘high risk’ was initially framed around the elderly and people who are very sick, but it includes so many others. if you have diabetes, high blood pressure, for example, these people are at a much higher risk too.

it’s tough. i’ve seen my sister and my nephews once since february. it’s devastating. i haven’t seen my friends in person for eight months.

how are you coping?

i am investing in therapy. since i have ptsd, and then the sheer loneliness of being very careful — it’s very isolating. i finally said to myself, ‘you know what, i think i need to talk to someone’.

your book, chronic christmas, is about managing the holidays with a chronic illness. what are your tips for getting through the upcoming season?

one of my favorites is figuring out what the holiday season truly means for you and focusing on that. so if having a wreath on your door gives you joy, then make sure you have the best possible wreath you can find, and forget about everything else. or decorate the room you spend the most time in and forget about the rest of the house. bake one kind of cookie, instead of twelve kinds of cookies. the key is to really hone in on what gives you the biggest enjoyment, and making it happen.

for people who don’t have a chronic illness, but want to help, it’s being specific about how you can help.

for instance, one of the biggest problems for me is wrapping presents. it always hurts. if someone said to me, “you buy the cookies, and i’ll come up with blue paper and wrap your presents,” then you can have a good time together while the presents get wrapped. things like that can be so incredibly helpful. it’s not about coming in and solving my entire life’s problems — it’s vacuuming and wrapping presents.

how do you deal with people who underestimate your abilities?

from the very beginning, there was a lot of struggle. when i got my hips, the doctor suggested that my parents put me in a group home because, you know, they couldn’t possibly take care of me. luckily, my parents basically said something rude tried to give me as much they could. i’ve been incredibly privileged.

i used to have people randomly popping out to tell me that they would pray for me — probably because of the wheelchair. that doesn’t happen anymore, thankfully.

i think one of the challenges these days, is that ra is becoming an increasingly invisible illness, thanks to these new medications and biologics. but there is a stigma and a complete lack of understanding because some people look healthy — others tend to overestimate what you can do. there are certain benefits to having visible signs of illness because people don’t doubt that i have ra or that i’m in pain. but on the other hand, there’s also a lot of stigma by having a disability and having physical deformities — plus people tend to underestimate what you can do.

readers interested in learning more about life with rheumatoid arthritis can check out lene’s website, the seated view , as well as her books chronic christmas: surviving the holidays with a chronic illness , your life with rheumatoid arthritis , and 7 facets: a meditation on pain.

if you or someone you care about is living with rheumatoid arthritis, connecting with a support network can help to not only learn ways to better manage their health, but also share experiences with others. resources include the arthritis society, talk over ra, the rheumatoid arthritis support network and the arthritis foundation.

emjones@postmedia.com | @jonesyjourn

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rheumatoid arthritis: what it feels like

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rheumatoid arthritis: what it feels like

'you can’t just expect us to stay inside for two years while you go out and not pay attention.'

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