Everyone’s lupus journey is different, but the one strand that links most of them is that going from onset to diagnosis is usually very LONG. In my case, it was seven years, and while I felt that was far too long, I have heard of fellow lupies who go fifteen, twenty years plus before receiving the correct diagnosis. This is due to a number of reasons, including that lupus being so systemic means it can imitate so many other disease (it is known as the “great imitator” in medicine), and the fact that many doctors don’t actually understand it themselves. We lupies may have completely different symptoms and lives, but most of us have thought we were crazy and been told by doctors that we’re merely hypochondriacs. I certainly have, and these are the details of my long journey to my lupus diagnosis. Click the bottom link for the short version!
Everything really started at Christmas 2005. I was 14, about a week off my 15th birthday, and the family’s Christmas was pretty much ruined as most of us were suffering from the flu. Everyone else got better, but I never seemed to shake off the fatigue, and spent most of the next four or five years suffering from chronic fatigue. I was sleeping about 18+ hours a day; if I could go to school, I would, and end up falling asleep in classes; I’d come home and go to bed; my sister would wake me up for dinner and feed me if necessary; I’d go back to bed until she woke me up at night to go to the toilet and I’d go to bed for the night.
I lost a lot of weight in a very short time, and missed a lot of school, so I have no idea what people thought was going on with me. I became very skeletal and pale, and it didn’t help that I was going through a Goth phase! Because my appetite was terrible, I think some people suspected it was an eating disorder. People had also seen my self-harm scars, and who knows what they drew from it. One teacher was fantastic and let me nap in her classes, as her husband suffered from chronic fatigue and she tried to help me as much as she could. Another teacher kept yelling at me for falling asleep, but after three times in one week, she kept me behind and I explained what was happening, and she was understanding.
Skepticism from doctors
I didn’t actually go to the doctor about it until May, about five months later, which in hindsight was silly, but I was expecting that it would clear itself up. (Insert stereotype here about stubborn men not going to the doctor!) Unfortunately my first experiences with the doctors was not good, and they basically told me it was hormonal, my body adjusting in puberty, that it was basically just me being a “bit tired and a bit sore”. Even when more symptoms developed, such as grand mal seizures, I was told it was “night tremors”. I managed to get some investigations going out of sheer insistence, but doctors were not keen to pursue these despite some abnormalities in them; my EEG had some abnormalities, but after I missed the three repeat appointments as I was too ill to make them(!), I was taken off the list and the doctors pretty much refused to re-refer me. After my EKG, I had an appointment to be fitted with a 24-hour monitor, which was canceled for “admin reasons”; when I inquired about re-referral, the doctor said “Well, I don’t think it’s any serious cardiac issue, anyway”. I was diagnosed with “post-viral syndrome”, for which not a lot could really be done except waiting it out.
I saw a gastroenterologist, who was virtually no use; it was his substitute when he was off who made progress with me, ordering an EKG, tests for kidney disorders (which would link up the weight loss and fast heart rate) and an endoscopy. Unfortunately, nothing really came up in those tests (except the EKG, but the issue with repeats happened as I said above), and I was more or less back at square one. I was referred to a neurologist, who I thought would pursue the issues with the EEG; instead he saw my self-harm scars, focused almost completely on that, and sent me away telling me it was psychosomatic. He also had me follow him around the hospital to prove I was “physically capable” of walking about and up and down stairs; I was in tears and pretty much collapsing. I yelled at him in the session and was sobbing, and my mother and sister also yelled. Later I apologized to him and acknowledged to him that psychosomatism is not the same as hypochondria; he referred me to a psychiatrist-neurologist team in another city, but after the initial psych evaluation with someone who wasn’t even this particular psychiatrist, they never sent back to me, and when I asked my GP about it later, he said they said they were done with me, without even seeing me.
Of course on top of this, my family didn’t understand, thinking it was just generic tiredness and pain, that I could still be normal. When I said I couldn’t manage certain things, they’d ask why. I began to think it was just all in my head, and that was I was crazy, and my mental health issues relapsed massively (I have suffered since about 10). I felt increasingly isolated, missing school and feeling out of pace with my groups of friends when I managed to get to school. I was bullied for various reasons by other kids, which just made me even more alone. Everything culminated in a suicide attempt – unfortunately this stayed between my sister and me, and my parents didn’t find out.
Fibromyalgia diagnosis and giving up
Only one doctor seemed to take me seriously, and when I said sheepishly to him that many days I couldn’t put weight on my legs because of the swelling and pain, he diagnosed fibromyalgia, which I’d never heard of. This was a step forward, and he prescribed some medication to help. Unfortunately this didn’t cover many of the symptoms that had developed by this stage, and I soon discovered that few people took fibromyalgia seriously anyway. It didn’t help matters that sufferers are mostly women; at one point when I mentioned a DOCTOR who had said a certain man couldn’t have suffered with a “woman’s disease”, someone on my Facebook had the audacity to question why I thought I had it, and she decided that I didn’t have it, someone who I haven’t met in person, who isn’t medically qualified in any form, telling me online what diseases I did and didn’t have. I began to become ashamed of the fibromyalgia label, as in ways it caused me more problems than I had before, even more skepticism from some people. Having given me this diagnosis, the doctors were reluctant to investigate any more.
I gave up. I felt I had done whatever I could, but doctors just weren’t taking me seriously. I had gone through the whole spectrum of emotions, even dramatically wishing it was something serious like cancer, or the headaches were a brain tumor, just so I could get a diagnosis and treatment, instead of the uncertainty and no treatment. Being fobbed off took so much of a toll on my mental health that I said to myself, I was just giving up this journey to find what was wrong with me. I struggled through the end of high school, gaining good grades despite missing so much of my final two years, and got into university to study anatomy. I thought it could be a new start for me. I didn’t really tell anyone the details of my health issues, from the fear of them thinking I was a hypochondriac – it’s hard having many lists of symptoms without a nice succinct disease name to include them all under! I did join the disability service, but didn’t really do anything with them at first.
New doctors at university
The turning point came when a new doctors’ surgery was established on campus. I was already seeing one of them for regular injections, and we would often chat about my studies; I thought he was pretty awesome, and saw this as an opportunity to pursue a diagnosis again with someone I thought was understanding. Unfortunately, while he admitted that GPs are bad with these systemic issues, he still looked at my list of symptoms and dismissed me, saying I should go to the gym more to get my energy levels up. As someone who struggled enough with everyday life, this was quite a kick in the teeth. It felt like I was going through the dismissals and accusations of hypochondria all over again.
However, the major difference this time was that my studies encompassed pathology and medicine, and I began to suspect that I was suffering from a connective tissue disease. So I took this hypothesis to the same doctor who told me to go to the gym more, and requested that he order the ANA test. This is a test for anti-nuclear antibodies, and it can suggest connective tissue diseases such as lupus, although it’s not 100% specific; lupus sufferers sometimes have a negative result, and healthy people can have a positive result. He pretty much refused, and said it’s a long shot. I asked him why he felt qualified to say that based on one session with me looking at my list of symptoms. I had to beg him and beg him for the test, and when I went for my next injection with him, he said again “Do you still want this ANA test?” I said YES, and didn’t leave until he took the blood for it.
Unfortunately, this doctors’ surgery was not the best at being organized and getting results etc. to the patient in good time. So I went away for three weeks to Greece and Italy with my sister (for her Classics degree) without knowing what the result would be. Although as I said, the test is not the most specific, it was a pretty monumental time for me, seeing if I’d be one step closer to the diagnosis. Frustratingly, even after I got back from the trip, there had been admin errors and I still didn’t have the results from a simple blood test. Of all the results to wait months for, this wasn’t the most ideal!
When the results finally came in, I saw a different doctor altogether – this one had been praised by my sister who had seen her herself. She explained to me that the antibody test had come in strongly positive, and I almost cried in relief. She asked me what made me suspect it was a connective tissue disorder, and when I explained, she sympathized and said I had done the right thing in badgering the doctor for the test. She arranged my referral to a rheumatologist, and I have never seen the other doctor since to show him that it was a good idea to just do a simple test instead of pushing his skepticism upon a patient who knows their own body. I get that he was more qualified than me, but he wouldn’t even do this test for my peace of mind. I don’t understand that at all.
Rheumatology and diagnoses
My first rheumatologist was lovely. She formally diagnosed me with Ehlers-Danlos syndrome, type 3 (or hypermobility type) (I had known I was hypermobile since childhood; it’s a bit difficult to mistake elbows and knees that bend quite a way backwards for something else! Also I have family members with it too, across a severity spectrum), and did more blood work on the connective tissue disease side. As I didn’t fit all the criteria for any particular one, she diagnosed me with Undifferentiated Connective Tissue Disease. Finally, I had my diagnosis! She began me on treatment for it, and sent me to rheumatology physiotherapy for my joints. I did feel that she was too quick to pin a lot of my pain onto my hypermobile joints, but she did order a lot more tests into the organ issues too.
When I moved back to my hometown, of course I transferred to a new rheumatologist here. Although UCTD can progress into a particular connective tissue disease, mine was unlikely because I’d had it undifferentiated for over five years. However my second rheumatologist diagnosed me last year with lupus. It was the one thing I hadn’t wanted to happen, and in fact my sister’s one hope for the new year was that I didn’t get the diagnosis – that only lasted until somewhere in January! All in all, I have found it a relief to have the lupus diagnosis. I’m having treatment, and importantly, we are keeping an eye on everything else to make sure any more secondary conditions that arise are treated promptly. I’ve been diagnosed with many other secondary conditions already, which is usually the case with lupus, and we are particularly monitoring the organ involvement.
And here I am! It was a long way to a diagnosis, and the journey of lupus is a permanent one. Every year, new parts of my body are affected, and new conditions diagnosed. New challenges arise, and I overcome others. The good thing is that I’ve come through the grieving process that all chronic illness sufferers must, and it’s a lot easier to come to terms with everything when you acknowledge that you will not wake up one day and be magically well. People find it strange when I tell them that it’s been easier since reconciling myself with the fact that this is forever, but I think it’s all about expectation. If you expect to wake up well and be able to keep up with everyone else, you’re only going to be disappointed. When you’ve grieved for your old life and found your “new normal”, it becomes a lot easier to go at your own pace. It’s still hard, of course, and lupus is a very difficult and frustrating disease, but support from fellow sufferers made all the difference for me, and this is what I hope to provide for at least one other person.
The short version!
- I got sick along with the rest of the family in Christmas 2005, when I was 14. This seems to be what triggered my lupus.
- I suffered from mainly chronic fatigue and tachycardia at first, along with general symptoms like headaches, and doctors didn’t take it seriously, telling me it was normal for teenagers and attributed it to hormones and puberty.
- I persevered and saw various specialists to no avail; by the time various doctors had called me a hypochondriac, I was ready to give up. I got a new lease with the diagnosis of fibromyalgia, but unfortunately many people’s misunderstanding caused me to be ashamed of the label, and again I gave up trying to find the answers.
- After a few years, a new doctors’ surgery was established at my university, and so I went along with my symptom list to start my investigation again. The doctor was very dismissive. From my degree studies (anatomy), my condition seemed to me to be a connective tissue disease, so I asked the doctor to do a test for anti-nuclear antibodies, which can strongly suggest these diseases. I had to fight very hard, and he was adamant that it was a long shot.
- Finally, the test came back strongly positive, and I didn’t see that doctor again; another was very sympathetic and referred me to a rheumatologist, who diagnosed me first with UCTD, or undifferentiated connective tissue disorder, because I didn’t fit enough of the criteria for a particular connective tissue disease.
- Around the start of 2013, my new rheumatologist (whom I started seeing after graduating and moving back home) diagnosed me with SLE (lupus) and here we are! I have accumulated many other diagnoses on the way as most people with lupus have, and we’re keeping an eye on current and developing symptoms, as well as checking how well the treatments are working.