I hope some of you will find comfort in reading my story
My name is Jen and I’m from the region of Northeastern Ontario, Canada. I am 22 years of age and am diagnosed with undifferentiated connective tissue disease, also known as UCTD.
It was towards the end of my first year of university, in March of 2012, when I noticed something was off. My left wrist became painful and stiff. I did not recall injuring it, but I figured the malaise would eventually disappear on its own. Luckily, I am right handed so I was able to get by. Summer months went by and the pain and stiffness was still present. I finally decided to make an appointment with my family doctor at the end of August and I explained to him that my wrist was stiff in the morning and it hurt when I moved it. He answered, “well, don’t move it then”. He did, however, send me for blood tests which came back normal.
About a month after, I started having lower back pain and knee pain, on top of the wrist pain and stiffness. I was starting my second year of university and honestly, I just wanted to forget about the pain and brush it off. I let this go on for another month or two, but more symptoms surfaced. I made an appointment with the university physician and we discovered that I had an ovarian cyst on my left ovary and abnormal urinalysis results. I continually had too much protein, as well as white and red blood cells in my urine. By this time, I also had painful and abnormal bowel movements (BM). This being said, I was treated with antibiotics to try to improve my urinalysis results, got sent for an MRI of the lower back in order to make sure that I had no tumour affecting my BM, and got sent for blood tests. Well, the antibiotics did not improve my urinalysis results, the MRI was clear, but the blood tests showed that my C-reactive protein (CRP) levels were very high, which usually means that there is inflammation in the body.
By December, I was still getting treated with antibiotics in order to improve the urinalysis results, but to no avail. My fingers started getting stiff, my back pain stopped me from walking for almost three days and I was very fatigued. The university physician sent me for more blood tests and my CRP levels were still very high. We agreed to make an appointment after the holidays because I was heading back to my home town for a couple weeks. During this time, she made a referral for me to see a rheumatologist in our area.
Well, by the end of December, I vomited every meal and after a while, stopped eating altogether because nothing would stay in my stomach. This went on for a month and a half. I was severely dehydrated, I couldn’t eat, and I vomited every day in average ten times a day. More symptoms developed. My eye lids were swollen, I had acid reflux, muscle sprains, migraines, memory blanks, extreme weakness, difficulty concentrating, dizzy spells, rashes, muscle spasms, and many, many more. After an ER visit, I was put on IV medication and got blood tests, ultrasounds and a urinalysis. My urinalysis results were still very abnormal, my blood tests revealed that I had inflammation in the body and ultrasounds revealed that some of my organs were inflamed. This led them to believe that it must have been something to do with my kidneys. So, they made a referral to a nephrologist and sent me home, with absolutely no relief.
The week after, I got an appointment with the nephrologist and he suspected I may have issues with my kidneys due to the severe back pain and the abnormal urinalysis results. He wanted me to do a 24-hour urine collection before doing any kind of kidney biopsy. After completing the 24-hour urine collection, he referred me to a urologist, thinking it had more to do with the urinary tract system. Meanwhile, I am having new symptoms. I had painful ankles, fevers and night sweats, swollen lymph nodes and tonsils and hot/swollen joints. All while going to school full time and living by myself.
I eventually had to talk to my professors and made them aware of what was going on in my life. I was very ill in class, I had to wear a wrist brace, I missed classes because of unexpected symptoms, I was writing assignments and papers at the hospital, and so on. Luckily, they understood and were very flexible with what was going on. I will forever be grateful for all the accommodations they made for me during that time.
In February, I saw the urologist and she performed a cystoscopy. She simply said “wow you’re severely dehydrated, I have no idea how you’re still alive right now.” That was all she could do. Not long after, I developed hives, all over my body, and ended up at the hospital. They discovered I had a swollen spleen, swollen and infected tonsils and obviously, the hives. They thought I had strep throat or mono, but both tests came back negative. I was prescribed Prednisone which I took for that week. I was very skeptical on taking Prednisone but since no other medication was helping me with the pain, the university physician suggested I keep taking it until my dose was complete.
Fortunately, not long after I stopped vomiting, after losing almost twenty pounds, and was able to eat again. Some of my symptoms’ intensity lessened and my urinalysis results were back to normal. However, I still had joint and muscle pain and my CRP levels were still abnormally high. I was finally done my second year of university and heading back to my home town for the summer months. After going through that flare, I couldn’t complain. During that summer, I developed more joint pain in different areas, like my hips and my jaw. In addition, I started having problems with my esophagus. I also noticed I couldn’t really do the things I used to be able to do. For example, I couldn’t be out very late because after 8’oclock I was in excruciating pain. This required me to change my habits and open up to my friends and family about everything that had happened. Luckily, most of them understood.
School started again in the fall; I was now in my third year of university. I made an appointment with the university physician as she was concerned that my CRP levels were still elevated. She couldn’t make a diagnosis, but in her mind, she thought I had lupus or some form of arthritis. What she was most concerned about, though, was the fact that my joint pain was becoming debilitating. I wasn’t able to open doors or jars or hold things because of the wrist pain and stiffness, I couldn’t stand up in the city bus on my way to school, I couldn’t go grocery shopping, I had trouble writing notes in class, I was lying in bed early in the evening due to back, hip and knee pain, and Tylenol, ibuprofen, Meloxicam and Celebrex wasn’t helping. I now had developed another symptom. I had blue-grey coloured toes, knee and ankles. This would last for a few minutes and then disappeared.
The university physician decided to contact the office of the rheumatologist she had initially referred me to a year ago, but they told us that they were very busy and weren’t able to take on new patients for a while. You see, this rheumatologist is the only one practicing in Northeastern Ontario, which means that wait lists are incredibly long. As we all know, when someone is affected by an autoimmune disease or chronic illness, it’s important to begin treatments as soon as possible so that the disease doesn’t cause irreversible damage. This being said, the university physician referred me to a rheumatologist about 3h away from where I live. Within three months, I had an appointment with him.
It was March of 2014 when I had my first appointment with my rheumatologist. I must admit, I was a little nervous. I didn’t really know what to expect. Luckily, I had kept a timeline of everything that had happened over the past two years, from the moment I first had wrist pain, to all the new symptoms I got every month. I also had taken pictures of rashes, and swelling and bruising of joints. This really helped! We often face doctors that say “it’s all in your head”, but when you have proof with pictures, they are more likely to believe that something is really happening. Of course, it also helps when there are test results to back you up!
Well, my rheumatologist was very open to listening to my concerns and was very thankful I kept track of every symptom. He sent me for many tests. I got MRI’s done, X-rays of every joint, numerous blood tests, urinalysis, and more. He prescribed Plaquenil, knowing already that I had an autoimmune disorder and wanting to begin treatment right away. I also had a Cortisone injection in my wrist. After a couple months on Plaquenil, my wrist pain and stiffness improved. I still take Plaquenil daily and never had any side effects with this medication, thankfully!
Two months later, I had an appointment with my rheumatologist again. Following with test results, he said I had a small cyst in my wrist, but that the pain and stiffness is not likely caused by that cyst and that it’s most likely due to arthritis. He then proceeded with test results and confirmed again that my CRP levels are elevated, as well as my antinuclear antibodies (ANA) levels. These tests are often used to diagnose rheumatic and autoimmune diseases. With these results, my rheumatologist suggested it would be best to see me every three or four months, and get my blood tested regularly.
At this point, it was summer time, and for many of us with chronic illnesses, summer time consists of less flares and complications. I still did have daily joint and muscle pain and moderate to severe pain in the evening, but it was becoming my new normal.
In September of 2014, entering my fourth year of university, my rheumatologist diagnosed me with undifferentiated connective tissue disease. Many people don’t like this diagnosis because of the word “undifferentiated”, which makes it seem as though doctors just don’t know what’s wrong. However, many rheumatologists’ patients are diagnosed with UCTD and more awareness needs to be done. Essentially, UCTD is an autoimmune disease that affects your whole body. This includes the joints, muscles, skin, and cartilage. It can also impact the organ system such as the heart, lungs, kidneys, nervous system, eyes, blood vessels, gastrointestinal tract, etc. Patients are diagnosed with UCTD when they have symptoms from a variety of connective tissue diseases like lupus, rheumatoid arthritis, scleroderma, and many more. In other words, we don’t have enough symptoms from a specific disease to be classified in that group, and so we remain undifferentiated with classic symptoms of a variety of diseases. Eventually, UCTD can develop itself into one of many connective tissue diseases, or a patient can remain with UCTD for all their life. In my case, I experience symptoms of lupus and rheumatoid arthritis.
After being in pain for three years, experiencing different and random symptoms on a weekly basis, getting medical tests done regularly, seeing many different doctors, going to school full time and going through most of these obstacles by myself, I finally felt relieved! I already had an idea of what chronic and autoimmune diseases were. My grandfather has Type 2 diabetes, a chronic illness. My grandmothers both have osteoarthritis, a chronic disease. My brother has psoriasis, an autoimmune disease. My mother had asthma, a chronic illness that sadly took her life. Whether you are familiar with these illnesses or not, it’s never easy getting told that you have an autoimmune disease, essentially meaning that your body is attacking itself. It’s also never easy to know that your disease is chronic, meaning there is no cure. However, getting a diagnosis, whether it remains UCTD or turns into another connective tissue disease; really helps. It’s easier to treat when you know what’s going on and it’s easier to explain to others as well. No, a diagnosis does not take away the pain and suffering, but it gives you a sense of hope and understanding.
During my four years in university, I studied Social Work. I went into the program not knowing what I wanted to specialize in. After my experience with an autoimmune, chronic and invisible disease, I now know that I want to work towards raising awareness and helping those who suffer the silence just like I did and still do, and just like my family members have been doing for years prior. I am a lot more open about my illness and will answer any questions people may have, but it’s always scary to put yourself and your disease out there. Yet, in order to break the silence, we must speak. I now have an Honour’s Bachelor of Social Work Degree and am pursuing my studies into the Masters of Social Work program. Without this disease, I would not be the person I am today and I wouldn’t have the goals I have now.
Yes, I struggle on a daily basis. Waking up in the morning can be painful when my feet are swollen and hurt terribly when they touch the floor. Driving can be off limits when my wrist is painful and stiff. Exams can be quite hard to write when my hands decide to get hot and swollen. Evening plans are often unbearable when I’m experiencing severe back, knee and hip pain. Day to day activities can be difficult when I’m experiencing flu-like symptoms, without actually having the flu. Regularly getting rashes also doesn’t help with self-esteem. Trying to eat can be dreadful when you can’t bend your arm enough to bring your fork to your mouth… and so on. Yes, I sometimes fake a smile and often say that “I’m ok” when in reality I’m in so much pain I just want to cry. I have very good days and very bad ones. But, generally, I have a great partner who listens and helps me during my toughest and best moments, who encourages me to achieve, but also makes sure I don’t push myself to my limit. When you have those friends and family members that truly try their best to understand and help you, it’s important to keep them close. We will all face people that will judge us because “we don’t look sick”, but it’s important to try and raise awareness, so that fewer people will approach the chronically ill with that mindset.
I was diagnosed a year ago, but have been sick for some time before that. I get steroid injections in my joints, I regularly go for medical tests, I take medication on a daily basis, but still haven’t found the pain medication that works for me, I make sure I take vitamins and am looking at trying natural medicines as well. I’ve recently been referred to a dermatologist to help treat my rashes and skin discoloration. My rheumatologist is working on keeping my ANA levels as low as possible because the higher they are, the more damage it does. He’s also focusing on my joints and muscles by keeping a close eye on them and monitoring my pain levels. All in all, I feel like I am in good hands with this rheumatologist and trust that he would do anything to help me.
With a chronic illness, it’s important to stay active but not to overdo it. Move at your own pace; don’t push yourself to the point where you can’t function anymore! Being in the mental health field, I also believe that having positive thoughts and a good perspective on things truly helps with the physical symptoms as well. We eventually learn what our limits are, what works for us and what doesn’t. It’s all about getting to know oneself by trial and error. But, chronic diseases are very unpredictable and we are in for a surprise almost every day when we wake up! However, it’s important to remember that our mind and body are interconnected and if one isn’t healthy, the other will struggle as well.
Stories like all of these are very helpful. You realize that you are not alone and that many people are struggling and suffering out there as well. Not only are they empowering, but very inspiring too. I want to thank you all for sharing your journey and I hope some of you will find comfort in reading my story as well.