MADELINE FULLER
21 years young.
Yes, she is "old enough" to have arthritis.
When Madeline Fuller, now 21, was a seven-year-old girl, she remembers sitting on the couch one afternoon with sore wrists. Telling her mom “it hurt,” was all she could do.
Even though telling mom is the typical protocol for a child with any sort of injury or pain, this wasn’t the typical case. This wasn’t just a scrape on the knee from the playground. Or a paper cut. Not even a broken bone. This pain Fuller was experiencing for the first time quickly became her reality. So quickly, that she doesn’t even remember what it feels like to live without the chronic pain of her rheumatoid arthritis (RA).
“At the time, I didn’t really realize much was wrong, I still felt normal. I wasn’t having to accept one big change because everything started happening gradually, up until this point,” says Fuller.
At the time of this interview, Fuller says she was in the midst of experiencing "one of the most aggressive flare-ups" of her RA to date.
Growing Pains
Her first tastes of this systemic, autoimmune disease was in losing the mobility of her wrists. Two years ago, at 18, she woke up with a swollen knee. Now, as a young woman, when she should be in the prime of her youth, she can barely straighten one of her arms or lift her shoulder enough to put her hair into a simple ponytail.
Madeline Fuller is only 21 and has been living with rheumatoid arthritis, and constant questioning, almost her entire life.
By Veronica Pocza
Madeline Fuller, 21, is entering early adulthood with rheumatoid arthritis.
Photo courtesy of Madeline Fuller
“I hardly remember the diagnosis process,” says Fuller, recalling her early life experience with this chronic condition.
After the doctors confirmed it was rheumatoid arthritis causing her joint pain, Fuller remembers, “going home, being put on medication, and my mom holding all these pamphlets about arthritis. I didn’t know what arthritis was, I knew I had it, but I didn’t know anything about it.”
“I don’t think my Mom was supposed to show me all of the pamphlets right away, because it could scare me if I saw or read about what could eventually happen” says Fuller.
Without the cause being solidly determined, common with most cases of RA, Fuller says her mother “took it on a lot.”
“It can be hereditary, and even though it doesn’t technically run in my family—other than my grandmother having osteoarthritis, which is common in old age—she still felt badly, ” Fuller recalls.
“Plus, I’m the baby of the family. That adds to it.”
Upon diagnosis, Fuller had to wear splints on both her ankles and feet to control her bones from shifting out of place. She remembers being at Girl Guide Camp in the third grade and sneaking into her sleeping bag at night to put on her splints, hoping the other girls wouldn’t notice.
“It just came down to me not wanting to have to deal with trying to explain,” says Fuller. A problem she would unfortunately experience a lot more of as the years go on.
“You can’t explain the pain of arthritis, you just can’t.”
After losing complete mobility in her wrists by the time she was 10 years old, Fuller says there were times where she would be experiencing such pain all over that she couldn’t even put it into words. There were times that her childhood friends even had to physically carry her to her classroom.
“I honestly would just say that ‘I hurt.’ I couldn’t do things for too long, like standing, sitting or walking, but that’s all my peers knew or understood,” says Fuller.
"You can't explain the pain of arthritis. You just can't."
Fuller was diagnosed with rheumatoid arthritis when she was just a 7-year-old girl. Here, two years into her diagnosis, she is pictured with her childhood cat Tabitha.
Dawn Richards, patient consultant and vice president of the Canadian Arthritis Patient Alliance, who lives with a diagnosis of RA herself, says it is common for those diagnosed with RA to feel misunderstood or judged like Fuller does.
“The whole business of arthritis being ‘a part of aging’ is a big stigma. It is a nasty and destructive disease that people shouldn’t be complacent about,” says Richards.
“A lot of people don’t understand the nature of the condition, or different forms of arthritis, because it isn’t a hot topic in the media. Although it [arthritis] has been around for a long time, since people aren’t dropping dead from it, people don’t think it is important.”
Fuller has experienced these doubts and misunderstandings first hand. She has been worried people think she is lying, or “faking it,” because of the condition’s tendency to flare up and calm down for different periods of time. These weren’t just the typical puberty problems of any teen in their “awkward years.”
It wasn’t just her peers struggling to understand. Having been diagnosed at such a young age, Fuller didn’t fully “get it” either. Without knowing much about this type of arthritis, Fuller was embarrassed of her diagnosis and had trouble accepting it. She can recall many times in school, from elementary to graduation, where her RA caused her to feel isolated.
According to statistics collected by The Arthritis Society, 20 per cent of women aged 15 and above are living with RA. Although Fuller is living proof herself, she too, grew up with associating her RA as a disease that came with old age.
“I think it was in English class one day, we read a short story and there was an older person in it who had arthritis,” says Fuller.
“I remember thinking, ‘I have that’…and just being confused.”
Fuller came to understand her RA by experiencing weakness, fatigue and joint pain from constant inflammation. Describing herself as “not very sporty” as it is, she had even more difficulty getting involved in physical education or other activities at school because it hurt to “even do one push up.”
At her young age, Fuller would often opt for “faking sick” to save herself from having to explain or feel embarrassed...two things that made her feel ultimately weak and isolated. There was even one year in elementary school where she had to sit out of almost every single gym class because her RA was in such a flared-up state, dragging the young girl down, joint by joint.
It wasn’t even until junior high school, sometime in the eighth grade, that Fuller felt she understood enough about her own reality to make a point to open up to others and attach RA to her identity.
With the help of her mother making Fuller’s diagnosis known to teachers and faculty, the young teen was able to participate in other joint-friendly activities while her classmates would pursue the regular gym schedule. Although not an ideal situation, and at times lonely, Fuller could begin to understand her limitations and the importance of not pushing herself to the maximum when it wasn’t necessary. A lot of this understanding came from clarity regarding the realities of RA and arthritis in general.
“As I got older, more of my peers had heard of arthritis, but they still only really know arthritis as osteoarthritis or associate it with the elderly. It probably still wouldn’t resonate to this day with most people of the general public if I said I had rheumatoid arthritis. A lot of people don’t know there are different kinds and that it impacts a lot of different demographics,” Fuller says.
Except, she didn’t experience an easy acceptance herself. Not a lot of power came from this knowledge, she just told herself to keep pushing forward. It is her only choice.
Madeline Fuller, 21, on her rheumatoid arhtirits diagnosis.
Photo courtesy of Madeline Fuller
20 per cent of women,
aged 15 and above, are living with arthritis in Canada.
The Arthritis Society
Living in a Catch 22
“I’d like to say I had this wonderful acceptance, but in my mind I was forced to deal with it,” says Fuller.
“I was 14 when I got my first job, I wanted to work and it [arthritis pain] wasn’t that bad. I wanted to experience the responsibilities in life that everybody else did and I wanted to get stuff done.”
With determination came peer pressure and wanting to embrace the “typical” experiences of those coming-of-age years. Soon, Fuller realized she would be in a constant battle with herself, constantly facing the decision of whether to follow what her mind wants to experience or to do what her body needs. More often than not, these are two completely different things.
“I never drank during high school at parties—even though nobody was technically ‘supposed to,’ it is known that most people do—and I remember people always asking me ‘why don’t you?’ They just thought I was a prude,” says Fuller.
“Not that there is anything wrong with just deciding not to drink and just obey the law, but it was really because I’m on medication and it is bad for my liver, but that is not a common constant ‘excuse’ for someone in high school. So that was hard, for sure.”
As she made the move into early adulthood after graduation, Fuller started to experience the limitations that came with her newfound, “working adult” freedom.
“By the time I was 18 I realized I had to start taking a bit extra care of myself. But, it’s funny, because it was also the complete opposite at the same time. When I turned 18 I didn’t want to continue to miss out on staying up late with my friends or going to the bar and have arthritis take over my life in yet another way. So I got to the point where I didn’t care, because I also had the mentality that ‘life is short,” says Fuller.
“I would think, yeah, I’m dealing with this disease, but I still want to be ‘normal,’” she adds.
Fuller has never experienced a truly “normal” life. She has, and will only continue to know, life with the unique conditions and concerns that come along with being a female living with RA. Fuller describes this as constantly being stuck between “caring too much and caring too little,” all of the time. It’s a constant balancing act.
One thing Fuller admits that she’s “always been really bad with,” is taking her medication. She believes these self-described “immature” habits of inconsistency stem from having been so young when she was diagnosed, along with still being in the prime of her youth today.
Fuller has been on medication ever since her childhood diagnosis. A few have been constant, others have changed in dosage and frequency, and some were short-lived.
Regardless of which medication Fuller is on, it is the emotional and mental effects of the medication process that have had lasting impact. Especially since she was faced with the responsibility of taking medications at such a young age.
Fuller admits when she was younger, like any kid, didn’t take things as “seriously as she as she should’ve,” simply because she just “didn’t understand.”
“It’s not fun for any young kid to take a bunch of pills if you don’t know what they are or what they are doing to your body. Then you also have to do a bunch of stretching in your spare time. At that age, it seems ‘boring’ or ‘annoying,’ you don’t realize the point of it,” says Fuller.
“Sometimes I get mad at myself now for not doing things I should’ve, but I can’t dwell too much, I was just a kid.”
Richards, as a patient consultant, has a wealth of research experience in arthritis and related diseases. She adds that Fuller’s feelings of “not knowing much,” aren’t just a common patient feeling. She is a big proponent of the fact that for a disease that has been around for such a long time, there is still a lot to be understood about it.
Fuller (middle) with close high school friends Katherine Aylesworth. Kaitlyn
Biggs, Tori Muller, Justine Beaulieu, Danica DePass and Dana Wasylyshen.
“We know there are a lot of genes behind causing it, but we don’t really understand those relationships, there are a lot of drugs that can treat it, but there is no cure. Even drugs, like Methotrexate, ease symptoms but we still don’t even fully know how they work. I find it interesting that there is still so much we don’t know,” she says.
When asked if any of the medications caused life-altering side effects, Fuller immediately mentioned Prednisone, a steroid commonly prescribed to patients suffering with RA.
At the time, in her late teens approaching early twenties, Fuller was experiencing unmanageable swelling in one of her knees. She was keen to try the drug, as she had grown up taking medication and “usually just went with whatever was prescribed.” She admits she usually asks few questions when given a new treatment.
Prednisone is known as a “wonder drug” in regards to aiding the symptoms of the condition, but Fuller says the side effects caused more trouble than the relief of swelling was worth. Fuller had heard those who were prescribed Prednisone were usually only on it for a short while, but Fuller was issued several refills for a number of months. She made the decision on her own to stop taking it.
“It makes you gain water weight, which is weight you can’t lose, it made my face wide, I had terrible acne. It is also common to experience heightened hair growth, which I did, but as soon I stopped taking it it, it all fell out. It just killed my self esteem,” she says.
After eliminating Prednisone, Fuller made the decision to start taking a medication called Enbrel, which is a biologic that is self-injected to help with long-term inflammation.
As she already struggles to take her oral medication daily, Fuller admits that injections aren’t ideal without the right mindset. Based on some of the decisions she’s had to face in regards to her medication, Fuller knows that if she deciding to take part in a certain type of treatment, it is because she is fully aware of the main benefits and risks—even if she doesn’t know every exact detail.
“It’s not the easiest putting a needle into myself but I know I need to if I want to take control of my own life,” she says.
“I remember looking into Enbrel two years ago and I had to read this pamphlet because it is still a fairly new medication. One of the side effects, even though really rare, is actually cancer. I remember being hesitant because of that, but a lot of people have seen more pros than cons, and I just thought I’d cross that bridge if I come to it. I have to keep living my life, and I have to manage this uncontrollable pain right now.”
Fuller says there comes a point when “you either just accept the help in the forms it comes in or you don’t.” She says she doesn’t want to get herself too worked up about possible side effects.
Building Her Future
Fuller is also getting Cortisone injections done on her right knee and right shoulder, and has high hopes that if she continues to take her medication properly that she may be able to put her disease into remission. However, she admits that she is prone to the thinking, “what is the point? What if it [the medication] doesn’t even work?”
Fuller says the most complicated thing about her RA is that it is an autoimmune disease. This means the immune system is weakened by some of the drugs taken to treat the symptoms of RA. If Fuller ever becomes sick with any sort of infection or even just a common cold, she has to temporarily stop taking her medication or the infection will not disseminate. She says this is a frustrating balance to have to constantly monitor.
She explains her condition as being “almost like a parasite.”
“I don’t want it to be a part of me, but it is and it dictates so much of my life,” says Fuller.
"It dictates
so much
of my life."
Madeline Fuller, 21, on her rheumatoid arhtirits diagnosis.
Photo courtesy of Madeline Fuller
On top of day-to-day maintenance and constant body awareness, Fuller has many thoughts about the future. So many, that there are times where she admits it is hard to get out of bed and snap out of her “downward spiral” thinking. She lays in bed, in a 21-year-old body, thinking of “almost every possible future scenario.” She explains them as “thoughts that a young adult shouldn’t be having.” Fuller is concerned with things that a woman in the prime of her youth shouldn’t be.
Her thoughts often consist of how her condition could impact her ability to care for someone else, whether it is a spouse or a child.
“The medications I’m on I’ve been told ‘would be harmful to a baby,’” says Fuller.
“Not that I’m trying to or could get pregnant right now, but when I eventually have kids it is going to be scary to see what I’ll have to do. If I have to stop taking medication while I’m pregnant, I wonder how hard the pregnancy will be for me. That’s the thing. If I go off the medication I have no idea how my body will react and that’s so scary. If I’m off of it [medication], will I even be strong enough to care for my children? Or be a good wife?”
When it comes to relationships and dating, something that should be “fun and somewhat carefree,” at this age, Fuller faces different concerns and complications than a typical young adult.
“I know if someone loves you enough they won’t care [about a chronic condition], but I’m still very self-conscious,” she says.
“I always tell people I have RA, but understanding what it is and what it entails is another thing.”
Fuller does her best to adopt the approach of crossing that bridge “if and when she gets there,” but she admits that when she catches herself thinking about it, it makes her frustrated and angry. Although not easy, Fuller acknowledges that she has felt angry “really often,” so often that she’s received counselling and realizes her arthritis was a “big part” of her feelings of negativity.
Patient consultant and Canadian Arthritis Patient Alliance vice president, Dawn Richards, adds that seeking mental guidance is a step in the right direction for someone in Fuller’s position. Although arthritis has obvious physical complications, Richards says that “the mental stress is not to be ignored.”
“The mental and psychological component of RA is a huge issue. As much as physicians and rheumatologists mean well, they are mainly trained to treat and acknowledge physical symptoms. The psychological part is a different realm and not as often addressed, the patient is sometimes left to come to terms with their mental struggle on their own, or not at all,” she says.
1/3 working Canadians living with arthritis have to stop working due to the unmanageable episodic nature of their condition.
Adding to the mental stress, Fuller has to balance quite the schedule. Instead of pursuing post-secondary, Fuller decided to go the work route after high school. This is a decision she says she "often questions" since her schedule requires a lot of flexibility to manage what is "practically another job," her RA. She has worked in everything from retail to marketing for not-for-profits.
“I spend a lot of time at appointments, since I see a rheumatologist every three months, have physio appointments every two weeks, counselling every two weeks. Sometimes the appointments are way longer than an hour, and the whole process can be mentally and physically exhausting.”
Fuller says these appointments sometimes serve as a reminder of “what is wrong with her” and often times she is left feeling defeated and can fall vulnerably back into her negative thinking.
Fighting the odds to stay mentally healthy, Fuller’s struggles are to be expected, as studies from The Arthritis Society state that “a Canadian suffering with arthritis is about a third more likely to report poor mental health, anxiety and depression, than others with other chronic illnesses and three times more likely than someone without any chronic illness.”
On a positive turn, Fuller has recently been able to find a flexible job that works with her appointment-filled schedule and better yet, she’s working for a close friend.
Since May of 2015, Fuller has worked for her friend’s home renovation company and it has allowed her to do everything from making phone calls from home if she is bedridden, to helping hands-on with projects and design. Like her condition, her work can fluctuate based on how she is feeling each day, a routine she is “grateful for” and feels happy in.
Fuller is doing her best to fight the odds against her, as one of three Canadians with arthritis have to stop working due to the unmanageable episodic nature of their condition.
The Arthritis Society
Finding Acceptance Through Faith
While working to stay positive, Fuller is determined to not stay in bed and “drown in self-pity.” Although she may not always have the energy, she says it is “crucial” to maintain a strong social life.
“My close friends, especially my friend since childhood, Caitlin, are willing to let me talk about it (arthritis) and be sad about it (arthritis). They remind me that it is okay to cry and feel like crap. Everybody has those times,” Fuller says.
In her youth, Fuller has come to what could be considered a very mature approach to the big picture of her condition. Having worked for charities before, Fuller realizes that there are those “with arthritis that have it worse than me, and those without arthritis that have it worse than me.” She tries to focus on what to be thankful for and the difficulties others face in their fight.
Most recently, Fuller has been able to come to terms with her condition in a new way. In becoming a Mormon a year ago, Fuller discovered something was missing in her search for acceptance that could be filled with faith. Noting that it is “not common” to come into a religion so late in life, especially from a non-Mormon family, Fuller said there were a few things that contributed to her choice and made it an easy decision for her.
“I met this missionary who started talking to me and the thought of it (Mormonism) brought me a lot of happiness. There were two main points that spoke to me. One is the faith that someone (God) cares about you relentlessly. The other is the comfort in believing that when your life is over, it isn’t ‘over,’ you’re going somewhere else and you’re resurrected into a new perfect body. I won’t have arthritis. There will be no pain,” she says.
Fuller feels relief in having something she “truly believes in,” but presses that she won’t push her religion on anyone else. After feeling isolated throughout junior high and lost after high school, her faith provides her with a feeling of solidarity she has never felt.
Fuller (middle) with the two missionaries that first welcomed her into the Mormon religion. Kaleb Clark (left) and Shelby Gonzales (right).
Fuller attends The Church of Jesus Christ of the Latter Day Saints every Sunday and has opened up about her struggles with the complications of her arthritis to those at church. She has created strong friendships with others as everyone “bonds over their hardships and helps each other through them.”
Although Fuller acknowledges finding faith through religion isn’t the route for everyone in regards to accepting a chronic condition, she hopes that everyone who is dealing with RA, or other long-term illnesses, can find “something, anything,” that brings her the calmness Mormonism does in her times of struggle and anger.
Even if Fuller is in the youth of her life, she is without a doubt in the depths of her disease, and almost 13 years into diagnosis has finally found her own sense of freedom. She plans to make both her fight and her faith a little bit stronger each day.
Like other women living with this disease, Fuller is well on her way to living with her acceptance. Everybody has their own ways and Fuller has found hers.
Fuller, being young and on her way to adulthood, is still adjusting with this disease and understanding how it will play out.
To see an example of how a woman, who is now a wife and mom of two, has adjusted to living with chronic pain, visit Valerie Vine's story.
Finding Acceptance Through Faith: The mini documentary about Madeline Fuller's path to coping with her rheumatoid arthritis.
Photo courtesy of Madeline Fuller