This is the story of my journey with autoimmune illnesses.
I was diagnosed with type one diabetes over 21 years ago, at the age of five. I adjusted fairly quickly and fairly easily to my new lifestyle, testing my blood sugar levels, moderating my diet and injecting myself with insulin four times a day. As a child, I obviously wasn’t as aware of the complications of illness, of the gravity of being diagnosed with a chronic illness, of how life-changing it could be. I always thought my type one diabetes was isolated, that it was the only serious illness I’d have to deal with throughout my life, that it was something I could handle. At the time, I wasn’t aware that type one diabetes is an autoimmune illness, meaning the body views its own cells as foreign invaders and attacks them. I was not aware that developing one autoimmune illness predisposes you to developing more autoimmune illnesses. If your body is susceptible to attacking itself, it doesn’t take much for it to continue doing so, time and time again, destroying healthy tissue in place of foreign invaders.
It wasn’t until I was at university that illness struck again. I started experiencing significant fatigue, joint pain throughout my entire body, and rashes on my hands and feet. At the time, I dismissed it as a virus and ignored the signs that something wasn’t right. As the months passed, the vague symptoms continued and I became increasingly aware that something was wrong, that I no longer felt like “me.” I went to the doctor and was referred to a Rheumatologist. After testing, I was diagnosed with Rheumatoid Arthritis (RA) and prescribed medication.
I now know that RA was an incorrect diagnosis. At the time though, I didn’t ask questions. I was young, distracted with everyday life, and didn’t have time for illness. I took my medication, started feeling functional, and forgot how bad life had felt when I was ill. After 12 months on the medication, I made an uninformed decision to come off it. I still believed I’d had nothing more than a persistent virus, that I was okay, that nothing else would possibly happen. Looking back, I know it was silly of me, but I was young and naive and felt invincible.
I stayed fairly well for a number of years, plagued only by occasional joint aches, occasional rashes and a persistent sense of absolute exhaustion (that I still tried to blame on my demanding lifestyle, which really wasn’t that demanding at all). However, these vague symptoms didn’t slow me down too much, and I ignored them. I ignored them until they were impossible to ignore, until they crippled me and demanded I take notice. It happened almost overnight. One day, I was fine. I was working and enjoying married life, and the next day, I noticed cramps in my legs. They started subtly. They started small. But, over mere days, the cramping and the constant pins and needles grew steadily worse. My legs felt like concrete. They felt tingly. They were so unbelievably heavy and uncooperative. Over the course of a week, I lost the ability to climb stairs, to get out of bed, to push myself up from a chair without significant effort. I struggled to walk normally, unable to lift my legs. Instead, I simply shuffled along at an embarrassingly slow pace. It reached the point where I couldn’t walk because I was absolutely exhausted. I felt tired in a way that didn’t make sense. I was spending all of my time in bed. I was sleeping 12, 13, 14 hours a day, but I couldn’t function. In addition, my legs and arms were covered in purple rashes. I looked like I was covered in lacy spiderwebs. I didn’t know who I was anymore. I felt like I’d lost myself. I went back to my doctor, who assessed my leg function and was absolutely floored by the severity of my leg weakness. I was admitted to hospital immediately. They feared stroke or brain tumor or ALS or MS. Whatever it was, they knew something was very wrong. I was terrified I’d never walk again.
That hospital visit was so unbelievably traumatising for me. I underwent every single test imaginable. MRIs, bone scans, CT scans, lumbar punctures, ultrasounds, neurological exams, physiotherapy assessments, blood tests, urine tests, stool samples. I was covered in bruises from repeatedly having my blood drawn. My tests showed significant inflammation in my knees, hips, shoulders and leg muscles. My blood tests showed a positive ANA and a positive double stranded DNA. I also had positive blood markers for vasculitis. They treated me with immunoglobulins, presuming that my primary diagnosis was vasculitis, and discharged me after seven long, frustrating weeks in hospital. I was also started on thyroxine for an underactive thyroid, which had also stopped working during my hospital admission.
I was discharged only slightly better than I’d been when I was admitted. My legs were still weak, although they were improving. However, recovery was slow. I had daily physiotherapy for months, trying to regain my muscle function, retraining my body to stand and walk and do everyday tasks that we all take for granted, tasks that I had taken for granted until I could no longer do them. Now, they felt like the only things that mattered in the world. Being able to move, being able to maintain some level of independence. Anything. Anything that would bring the old me back. Stairs proved the most difficult. I still could only climb one step. One measly step. After that, I needed to lie in bed for hours and hours, legs trembling, unable to keep my eyes open due to the extreme fatigue. However, I worked hard. I worked unbelievably hard and made steady, agonisingly slow progress.
The hospital had told me it would be an isolated incident, that I would move on from this event and it would be nothing more than a faint memory. They were wrong. Not even a month after leaving hospital, I started developing joint pain and inflammation. It started slowly–the inability to lift my shoulder to brush my hair, the inability to turn door handles, limping from sore knees. Then, it accelerated and hit me like a tidal wave. Once again, I was crippled. But this time, it wasn’t leg weakness. I was crippled instead with severely swollen, red and painful joints. I stopped being able to sleep properly because the pain at night was so intense. I woke up every morning, barely able to move because I was so stiff. I developed a butterfly-shaped rash across my nose and cheeks. I would sit outside in the shade for five minutes and come inside to find I was covered in a sunburn-like rash, which was hot and painful and left me feeling exhausted. The purple rashes on my arms and legs re-appeared. I didn’t waste time. I went immediately to my doctor, fearing another hospitalisation, terrified that this was STILL happening to me, that I wasn’t getting better. My doctor referred me to yet another rheumatologist. I was seen urgently. He repeated blood tests. My blood markers had more than doubled since I’d last had them completed upon my hospital discharge. This time, the symptoms and the blood markers clearly pointed to a diagnosis. I was diagnosed with SLE Lupus with secondary vasculitis.
Receiving that diagnosis brought mixed reactions. A part of me was relieved to finally have the correct diagnosis, an explanation for all of the things going wrong with my body. However, I mostly felt devastated and defeated. Absolutely defeated. I was in my mid-twenties, and I had four autoimmune diseases. Four chronic illnesses that would affect every aspect of my life until the day I died. I was started on medication (Plaquenil) and sent on my way.
It has been 2 years since I was diagnosed with Lupus/Vasculitis, and I still do not have my disease activity completely under control. In addition to Plaquenil, I am now taking Prednisolone (which is a constant balancing act with type 1 diabetes due to its effects on blood sugar levels) and have recently commenced Methotrexate. I have recently been informed that I am starting to show evidence of deformity in my fingers and toes. I still deal with sporadic episodes of severe leg weakness, regular joint pain, rashes, fatigue, Raynaud’s phenomenon, stomach issues and frequent eye inflammation.
My life has changed significantly due to my illness. I had a stillbirth in my sixth month of pregnancy in 2014, and although I was well at the time, I still deal with the fear, anxiety and guilt every day, wondering if it was my illnesses that caused that to happen. The doctors have reassured me it wasn’t, that it was “random,” but it is difficult to believe as it is impossible to prove. My marriage recently ended due to the loss of our daughter, as well as the emotional and financial toll of chronic illness. I am unable to work full-time, although I do still manage to do some work, which is a big positive for me. I struggle financially to make ends meet, paying for medications and medical appointments and losing income due to periods of missed work. I have lost a number of friends due to poor understanding of chronic illness and my unreliability with social commitments, due to the unpredictability of my symptoms. The hardest part of my illnesses are that they are mostly invisible. I look like your average 26-year-old. I look relatively normal. Sometimes, the outside doesn’t match the inside, and it is associated with a high degree of stigma, misunderstanding and frustration.
Sometimes, life feels very long. Sometimes, it feels like a never-ending cycle of bad news. However, I try to stay positive. I truly believe that I am a fighter. I have dealt with so many obstacles, and I am only 26. I have dealt with significant, debilitating illnesses. I have dealt with the loss of a child. I have dealt with the end of my marriage. I continue to wake up each morning and continue to tackle whatever life throws my way. It isn’t always easy. It’s never like the movies, where someone is given devastating news, and they just pick up the pieces until they reach their happy ending. It isn’t always pretty. It isn’t always positive. I’m not always inspirational or friendly or fun to be around. I’m not full of motivational quotes. I don’t always look like you’d expect a fighter to look. There are times when I am ugly. There are times when I cry. There are times when I scream. There are times when I truly want to throw in the towel and stop trying. But, I never do. I don’t really know why, but I just keep trying. I just do it because I don’t really have any other choice, which probably isn’t what people want to hear. But, it’s the plain and simple truth of things. I just keep plodding along. I take my medications. I attend my appointments. I make commitments. I make plans. Most of all, I hope. I don’t really have any other options. There is no point dwelling on what could have been. There is no point comparing myself to others and wondering why life isn’t fair. This is the hand I have been dealt, and there are still so many fantastic things in my life. I have a fantastic family. I recently travelled to the USA for a holiday, which was the best experience of my life. I have found new love. I manage to work part-time in a rewarding job. Every day, there are little things, things that most people probably take for granted, that make my life worth living. I have a roof over my head. I have food on the table. I can walk, which is something I couldn’t do two years ago and something I will never, ever stop being appreciative for. I am alive! That’s the best thing. I am still alive, and as long as I’m alive, I’ll continue trying to find my own version of a happy ending, even if it’s slightly different than what I always hoped for.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.