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| Image description: Collage on a white background. An askew Polaroid frame with a Bitmoji of Lara sitting on a red couch, gesturing for the reader to sit down with dark blue text above that reads "We need to talk. This is serious.". At the bottom of the frame is black text that reads “let’s talk lupus in detail” in all caps. In the corners of the frame are clip arts; clockwise from top left; an illustration of a medical doctor who is a woman with long black hair and brown skin, wearing a lab coat and stethoscope; a purple butterfly; an illustration of a character crying in pain and resembling Lara, wearing all black and has pink hair, pale skin, and red shadows to represent rashes around the cheeks, neck & arms; a purple lupus awareness ribbon. |
About Lupus & Origins of the Name
Lupus Erythematosus is an autoimmune disease where the immune system attacks the body’s own cells, mistaking them for foreign invaders.
Lupus is latin for "wolf", taking its name from the ye old days before the advent of modern medical science, where a 13th Century physician named Rogerius used it to describe a facial lesion that looked like a wolf's bite. Of course, we now know that this was the presentation of Malar Rash.
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| Image description: A close up photo of Lara’s face. She has a blank expression on her face, dark eyes, pale skin with freckles and slightly raised redness that looks like a mask across her cheeks and nose. |
Erythematosus has also latched onto the disease name and refers to "erythema", which if you're a skin nerd like me, you know that it means "redness". The term is almost exclusively only used in this context.
There are four distinct types of Lupus:
Sysmetic Lupus Erythematosus (SLE): this type affects multiple body systems, including, but not limited to the joints & other connective tissues, nervous system, cardiopulmonary system, and more.
Discoid Lupus Erythematosus (DLE): this type only involves skin and presents as disc shaped lesions on the body, and can cause distinct scarring.
Drug-Induced Lupus: some prescription medications used to treat other diseases can cause Lupus-like presentation, and it usually resolves when that medication is ceased.
Neonatal Lupus: this is a rare Lupus-like condition that affects infants born to those with Lupus, but usually disappears around the 6 month mark, and often doesn't cause further problems.
(Note: The terms "Cutaneous Lupus Erythematosus", "Lupus Nephritis" and "Cerebral Lupus" are complications associated with having Lupus, rather than being standalone diseases.)
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Who gets Lupus?
While Lupus isn't considered a rare disease, it isn't very common either. A lot of people don't know what it is, and if they do, it's usually from grossly inaccurate media portrayal *cough* Dr. House *cough*. Some very famous people have the disease, and have brought more attention to it.
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| Image description: Four panel collage of famous people with Lupus. Clockwise from top left; Seal (singer), Toni Braxton, Paula Abdul, & Selena Gomez. |
Seal's (British singer/songwriter) instantly recognisable scars across his cheeks are from DLE, and Toni Braxton, Selena Gomez, and Paula Abdul all have SLE. Selena Gomez has been one of the more recent prolific cases, having had chemotherapy treatment for a year and a kidney transplant with the donor being her best friend. She is currently in remission and doing well.
(Note: Lady Gaga is said to have been on the borderline of being diagnosed with Lupus; it runs in her family, however, she has not yet experienced any specific symptoms and she has been confirmed to have Fibromyalgia, another condition that causes some similar symptoms, which can be a comorbidity, but isn't related to Lupus.)
Cats & Dogs?!
Our fur-children aren't even safe from the disease! Lupus can also affect cats (Feline Lupus Erythematosus/FLE) and dogs (Canine Discoid Lupus Erythematosus/CDLE). FLE is usually a systemic form of the disease, while CDLE is more often or not a skin-only complication, commonly known as “Collie Nose”, although that term is also used for other conditions affecting doggo snoots too. Some dogs can have the SLE form of the disease, but it is very rare.
Panda The Border Collie
This doggo has SLE. Panda is an 11 year old Border Collie from the Albury-Wodonga area. I met her human, Kimmi, through an Australian Border Collie group. She is a rock for her human, who is also chronically ill. This is a recent photo of her, but she didn't look like this for most of 2020.
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| Image description: Panda, a black and white border collie dog lying on the couch with her chin on the arm rest, looking directly at the camera. There is a glasses case and remote control on the arm rest. |
Panda lost her fur when she broke out in some chaotic skin rashes on her belly and face. For months, the vets treated her with antibiotics, but didn't know where the rash came from, or assumed it was mange. Another vet looked deeper and found that she had issues with other organs, so they ordered tests. The skin lesions and other symptoms were consistent with SLE. She was diagnosed and was given immunosuppressants, steroids, and antibiotics. Her skin began to heal and her fur grew back!
Back to humans... Statistics
In humans, Lupus disproportionally affects those who have higher levels of estrogen. I say it this way because the statistics are skewed by medical transphobia. It is known that estrogen affects autoimmune disease activity, no matter if it’s from ovaries or HRT, but the statistics likely don’t include trans/non-binary people taking estrogen; it’s always “women of child bearing age".
If I have to put it in terms of sex assigned at birth, the assigned female to assigned male ratio is 9:1, with AFAB people more likely to have SLE, and AMAB people more likely to have DLE. Again, this excludes intersex individuals, but we humans like to oversimplify things when nature doesn't give a shit about existing in a quantised state.
Ethnicity plays a major role too, being the most common among BIPOC individuals. About 2/3 of all those diagnosed are of Sub-Saharan African, First Nations (Americas, including Hispanic), South/South East Asian, or Pacific Islander ancestry. The absolutely sad thing is that this ratio might be more because of various system failures leading to the under/misdiagnosis of Lupus in these populations, and it poses a greater risk of complications.
Having a relative with Lupus does increase your chances of developing the disease, but it can occur without it. I personally don't have any confirmed cases in my family, however, my Mum did have presence of some antibodies, which explains why I have them, but it doesn't explain why I have the disease and she doesn't.
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Symptoms & Diagnosis
Lupus (SLE) affects various organ systems, but the most common symptoms are joint pain, chronic fatigue, malaise (feeling off), headaches, fevers, mouth & nasal ulcers, skin rashes, and being prone to infections.
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| Image description: Lara’s right hand, palm facing up against a faux granite bench. Her hand is experiencing a Raynaud’s attack where the palms and part of the fingers exposed to the cold are completely white, and the tips of her fingers are bright red. |
Complications based on body system
These are all potential complications that can arise from SLE. This list isn't complete and there are a lot more potential issues that arise due to the complexity of the disease.
Musculoskeletal: pain/stiffness/swelling/weakness, inflammation of joints (arthritis), inflammation of muscles (myositis), inflammation of tendons (tendonitis), inflammation of fascial tissue (fascitis), joint instability and tendon laxity, loss of bone density (osteoporosis), etc.
Circulatory: abnormal blood cell counts; low red (anemia), high white (leukocytosis, active infection), low white (leukocytopenia, risk of serious infection), high platelets (thrombocytosis, risk of clots), low platelets (thrombocytopenia, risk of bleeding), swollen lymph nodes, increased risk of lymphatic cancers, inflammation of blood vessels (vasculitis), circulation disorders (Raynaud's, livedo reticularis, palmar erythema), etc.
Integumentary (Cutaneous Lupus Erythematosus): UV sensitivity (photosensitivity), hive-like rashes caused by exposure to the sun and UV lamps (photodermatitis), disc shaped patches of thick, scaly, red skin (discoid lesions), butterfly shaped rash across the cheeks and bridge of the nose (malar rash), redness (erythema), decrease in or loss of melanin (hypopigmentation/depigmentation), calcium deposits under the skin (calcinosis), hair loss, ulceration of mucosal membranes (mouth, nose, vaginal), slow wound healing, increased risk of skin cancers, etc.
Cardiopulmonary/Respiratory: pain when breathing, shortness of breath, inflammation of lungs and heart (pleuritis, pneumonitis, endocarditis, myocarditis, pericarditis, etc), increased risk of heart disease, increased risk of dying from respiratory illnesses (*cough* COVID *cough*), increased risk of Antiphospholipid Antibody Syndrome, increased risk of lung tissue scarring (interstitial lung disease), etc.
Neurological (Cerebral Lupus): cognitive difficulties ("brain fog" or "lupus fog"; confusion, executive dysfunction, memory problems, etc), seizures, increased risk of stroke, depression, psychosis and bipolar-like symptoms, inflammation of the nerves (myelitis), nerve pain, sensory disturbances, carpel tunnel syndrome, dysautonomia, headaches, sleep disturbances, etc.
Excretory (Lupus Nephritis): inflammation of the kidneys (lupus nephritis), protein in urine (proteinuria), blood in the urine (hematuria), urinary tract infections (UTI), inflammation of the bladder lining (cytitis), increased risk of urological cancers, etc.
Digestive: inflammation of the digestive tract (esophegus, stomach, intestines, colon), inflammation of the liver and pancreas (hepatitis, pancreatitis), inflammation of the abdominal cavity (peritonitis), abdominal pain, increased risk of gastroesophageal reflux disease (GERD), nausea, food intolerances and allergies, peptic ulcers, increased risk of GI tract cancers, etc.
(Note: Crohn's and Coeliac disease present very similarly and are usually tested for first.)
Reproductive & Endocrine: late onset puberty, issues with fertility, painful sex, contraindications to certain contraceptives/HRT, increased risk of complications from STIs, recurrent thrush, increased risk of insulin resistance & diabetes, greater chances of flares leading up to menstruation, etc.
(Note: pregnancy with Lupus is considered high risk and may be difficult, but it is completely doable with the right support.)
Personal Experience
The Lupus symptoms that I have are generally widespread inflammation of connective tissues, chronic fatigue, weakness, malaise, loss of stamina, UV and visible light sensitivity (light from a lamp or tv shining on my skin can trigger erythema and a burning sensation), loss of melanin, malar rash, costochondritis and possible pleurisy (pain when breathing in deeply), chronic sinusitis/allergies, mouth and nasal ulcers, chronic infections, thrombocytosis, Raynaud's phenomenon, and I'm certain it's responsible for half of the issues I have with my nervous system.
Getting Diagnosed
Getting diagnosed can take many years because Lupus is known as “the great imitator”. Other diseases may have to be ruled out, so it can take up to a decade to get diagnosed, with the average being about 6 years.
As SLE is primarily a rheumatic disease, it is treated by a Rheumatologist, and since DLE only affects the skin, it can be treated by a Dermatologist. Of course, that's not to say that you don't need a multidisciplinary approach, especially when other organs systems are involved. Those with specific complications may need care from other specialist doctors.
It usually starts by turning up to your GP with symptoms. They will ask questions about your medical history, your family history (including ancestry), order some tests, analyse them, then determine the best course of action from there. More often or not, they'll look for other things first, which makes things very complicated and delays diagnosis.
(Note: I do personally know somebody with Lupus who found out she had the disease after experiencing a seizure while brushing her teeth and waking up several days later in hospital, but that is a unique case.)
Lab tests include a full blood count, autoantibody screening (anti-nuclear antibodies (ANA) including rheumatoid factor, etc), urine screening, inflammation markers (C-reactive protein, erythrocyte sedimentation rate (ESR)), among others. Diagnostic imaging and biopsies can help determine if there are any visible signs of damage, such as within joints, lungs, kidneys, skin etc.
(Note: A positive ANA is commonly associated with disease activity but it is present in those without Lupus. A negative or low ANA doesn’t rule out a diagnosis of Lupus.)
There are Lupus-specific markers that are found in blood, but they don't need to be present in order to be diagnosed (I don't have any). They can show up in those who have complications such as Lupus Nephritis (kidney complications), Cerebral Lupus (CNS/brain related complications), Cutaneous Lupus (skin complications), and Sjogren's Syndrome (a separate disorder that is often a comorbidity and affects mucosal membranes).
The important thing to note is that Lupus symptoms and disease activity can vary in severity, coming in flares that can last for weeks to months. While there are many similarities in presentation, not every person diagnosed with Lupus has all of them, nor has the same severity as another. There is currently no cure for Lupus, but with treatment and monitoring, it can be controlled.
Comorbidities
Many people with Lupus experience comorbidities and circling back to why it can take so long to diagnose Lupus, these are often discovered first. Those with Lupus also have an increased risk of cardiovascular disease, thyroid problems, neurological & psychiatric disorders, metabolic syndromes, other kinds of arthritis, and cancer. Other conditions that are commonly diagnosed alongside Lupus include Raynaud's Phenomenon*, Rheumatoid Arthritis, Sjogren's Syndrome, Scleroderma, Coeliac Disease, Fibromyalgia, Osteoporosis, among others. Lupus can also reduce life expectancy, but this is often due to the increased risk of other complications, and not from the disease itself.
(Note: *Raynaud's is described in two ways. Primary Raynaud's is referred to as 'Syndrome' or 'Disease', and is its own disorder. Secondary Raynaud's is referred to as 'Phenomenon' and is a recognised symptom of Lupus and other conditions.)
Personal Experience
I have several comorbidities. These are accurate at the time of publishing and are subject to change in the future if anything new pops up.
Depression & Anxiety: again, many people with Lupus have some kind of neuropsychiatric manifestation, but it's difficult to tell whether the Lupus is the cause or they're just things in their own right, especially when they might be caused by social factors. Either way, these are very common symptoms associated with Lupus.
Hypermobility (potentially hEDS, but I have yet to investigate): this is hell because I'm looking at premature osteoarthritis. It also means while I move easily, my joints are weak and unstable, so doing things like lifting heavy objects is basically asking for trouble.
Chronic illness is usually a package deal like that, so it's not surprising for people to have them all together. Even if somebody seemingly just has Lupus, they may still have other undiagnosed conditions, so it's best not to assume that there isn't more going on than there is.
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How I Got Diagnosed
I was constantly sick with lurgies and rashes as a kid. I took longer to recover than my peers and hot weather left me living off antihistamines and steroid cream. I remember being achy all the time, little did I know that this would get worse when I hit puberty.
When I was around 14, I was struggling to go to school because I was riddled with pain and extreme fatigue. This was all brushed off as 'growing pains' but things really started to hurt when I began my period at 13. I presented to my GP (bless her, she’s still my GP) and it was unknown as to what I was dealing with. Lupus was mentioned in 2003, but put on the back burner after I saw a specialist and was only sent home with NSAIDs (non-steroidal anti-inflammatory drugs) and no further testing. I lost faith in rheumatologists because of that. The diagnosis was simply inflammatory arthritis from the age of 15.
My bloodwork always returned with a high positive titre ANA. The results kept coming back with a reading of >1:1280 (this is usually the highest dilution most labs do, so it's unknown if it's present at further dilutions, the value could be a lot higher). The lowest I recall it has ever been was 1:200, which was when I was about 17, but after a steady decade with it being >1:600 (moderate high), I managed to get it down to 1:300 in 2020 with treatment.
(Note: ANA is a very vague indicator, but a high presence usually coincides with disease activity. Usually a 1:600 or greater value is sufficient to diagnose Lupus.)
Back on the symptom front, my skin reacts poorly to the sun. Even though I was outside a lot as a child and tanned to brown, I still got painful rashes brushed off as "heat rash". They were all over my neck and arms, only getting worse as I got older, then my skin lost melanin. This was a major clinical sign that I might have Lupus.
(Note: it was very weird to see myself go from brown to a ghostly white from early puberty to early adulthood, and this has lead to a lot of misconceptions about me, including erasure of my ethnic background (very common amongst people who have pigmentation disorders, eh herm "when Michael Jackson was Black"), unreasonable expectations to be outdoors, and being told I look anemic, which I've never been, but I digress...)
I saw an immunologist when I was 20, but he wasn’t too convinced on giving me a Lupus diagnosis based on my bloodwork. Regardless, he began me on treatment, but it was met with minimal success. I went back to my GP and we began a process of elimination to rule out other autoimmune conditions such as Rheumatoid Arthritis, Crohn’s, and MS to strengthen my case for a Lupus diagnosis. In the mean time, she treated me with drugs used for Fibromyalgia to help with the pain, but they didn’t do much because of the autoimmune source of my symptoms.
(Note: I am back on one class of medication used to treat Fibromyalgia, the not-so-humble SNRI, but it's more or less for my depression & anxiety, and it's managed by my psychiatrist.)
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| Dr House meme format, a cutout of his head on a yellow/orange/red triangle sectioned background. Top line of text reads “well, we have ruled out rheumatoid arthritis, coeliac, crohn’s, and fibromyalgia”. Bottom line of text reads “it’s probably lupus”. |
I was recommended my current rheumatologist by my next door neighbour whose eldest daughter also has Lupus. After 9 years of agony, he firmly placed his finger on my blood work and said “yes, it’s Lupus” and we began treatment.
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Treatment & Management
Since there’s no cure, Lupus is usually managed in three ways; by targeting the source of the disease, symptomatic relief, and lifestyle adjustments.
Targeting the Source
This basically means suppressing or modifying the immune system's response. You’ll often hear Lupus patients say “the treatment is worse than the disease”, usually referring to DMARDs (disease modifying anti-rheumatic drugs) and corticosteroids.
DMARDs are less of a class of drugs, and more like a club. Some of them are siblings, some cousins, and others are just friends. They all have an effect on Lupus activity (and some work for other autoimmune diseases) but they go through different metabolic pathways to achieve this.
Hydroxychloroquine (HCQ/brand name Plaquenil) is always the first medication considered. Unusually, it's an anti-malarial class drug, but it has been used in treating Lupus successfully for over 50 years. Other DMARDs come in the form of anti-rejection and chemotherapy agents, such as azathioprine (brand name Imuran) and methotrexate (MTX/brand name Rheumatrex), respectively, and targeted therapies called 'biologics', which are protein-based immunomodulators, such as belimumab (brand name Benlysta). Prednisone is the most commonly prescribed steroid used to treat flares, and are used in the short term.
(Note: there has recently been a new lupus-specific drug called anifrolumab-fnia (brand name Saphnelo) approved for market by the FDA, and it's in the process of being approved in Australia by the TGA. It is more or less a complementary treatment for moderate to severe disease activity for those already receiving first line treatment such as HCQ, possibly to replace the use of steroids and act as a more targeted treatment, rather than the generalised approach of using second line DMARDs or steroids, or at least that's how I interpret it. It's unlikely that we'll see it being PBS subsidised* in the near future. *Pharmaceutical Benefits Scheme; we Aussies get medications at a capped maximum price.)
Personal Experience
I have been on 3 DMARDs. The first was hydroxychloroquine from the immunologist I saw back in 2009. I was on it for 6 months but didn’t respond much. I took it again when I saw my current rheumatologist, but it didn’t agree with me (or so I thought). I switched to azathioprine and it plateaued after I reached the maximum recommended dose. I tried methotrexate, a chemo drug taken once a week with a large dose of folic acid. I took tablets then moved to injections due to gastrointestinal problems, but I had to stop taking it because of constant infections. My rheumatologist actually advised me to skip it if I had an infection, which was most of the time. I think the side effects of methotrexate were the worst, I was just so unwell after taking it, but would improve after 72 hours and feel great for the 4 days before having to take it again.
My rheumatologist and I decided that MTX wasn't working, and I decided to go without DMARDs for over a year. I took two low-dose prednisone courses to help with some annoying flares, but I felt pretty rotten and I reluctantly went back to HCQ in 2019, scared it was going to cause gastrointestinal issues again. Turns out it was magnesium supplements causing the GI problems. I’ve had no ill effects on HCQ and have been successfully using it for just over 2 years now. I use Rx steroid cream for rashes.
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| Image description: Meme featuring Trump’s toupee photoshopped on a bottle of pills (left) getting yelled at by Lara’s Bitmoji character in a fighting stance (right) with text at the bottom that reads “Colourised: Angry Lupie cursing out Trump for the Hydroxychloroquine shortage of 2020.” |
(Note: Hydroxychloroquine is NOT a proven treatment for COVID-19 and it never will be. The shortages caused by the likes of ex-President Dump were a major problem for Lupies around the world, and should never have happened.)
Symptomatic Relief
Symptomatic relief is basically pain and other flare related management.
Over the counter NSAIDs are okay to take short term, but better tolerated, Rx-only NSAIDs exist. Proton pump inhibitors are useful when taking NSAIDs. Paracetamol is common for pain and fever. Opioid based painkillers and other types may be taken to manage more intense pain. Low-dose aspirin can be taken to prevent clots.
Because infection is a huge issue with treatment (and Lupus in general), antibiotics are a common thing. Expect to take a couple of courses a year. Usually, my rheumatologist will pick up a bacterial infection in my bloodwork when there are high levels of neutrophils present and will send me a script for a course of antibiotics.
Personal Experience
Since I've pretty much had no benefit with most Rx NSAIDs, I’ve stuck to Celebrex for around the past 6 or 7 years. I take 100mg daily; enough to notice if I don’t take it, but not enough for full relief. Taking anymore than that makes my gut hate me. I sometimes have to take a proton pump inhibitor to stop my stomach from digesting itself. I'm also prone to getting H.Pylori infections, however, I haven't had one recently, so that's good! I manage pain with Codeine because paracetamol does nothing for me.
Lifestyle Adjustments
Lifestyle adjustments are practical ways of managing symptoms. This is just general advice from my experience. Just remember, we're human, and even if we do everything right, we can still flare up.
(Note: Telehealth was the greatest implementation of the pandemic, and it needs to stay.)
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| Image description: Selfie of Lara with the sun glaring behind her head. She is wearing a black cap with cat ears being covered by the hood of her jumper, and black wraparound sunglasses. |
Sun Protection: Wearing sun protection and avoiding unnecessary exposure to the sun is a must, even if you don't have sun sensitivity (not all Lupies do). Some medications can increase photosensitivity, including, ironically some treatments to prevent photodermatitis, but you can just follow this general approach. Taking Vitamin D supplements is strongly recommended.
(Note: If you're in Australia, I highly recommend that you only use sunscreens approved for sale by the TGA, because sunscreens that are purchased from overseas may NOT cut it for our sun.)
Dietary Changes: While there are almost no serious dietary restrictions that should be practiced with Lupus, there are a few things that should be avoided. Alfalfa should not be consumed due to the presence of L-canavanine (found in the seeds and sprouts), an amino acid that stimulates the immune response and can even cause lupus-like symptoms in healthy individuals. I had to even clear a cosmetic product containing alfalfa with my rheumatologist before using it. Echinacea is thought to counteract the use of immunosuppressives and should also be avoided. Noni Juice is also contraindicated. A low-sodium diet is only recommended for those who have kidney involvement, or are being treated with steroids. The general advice is to eat a balanced diet and only consume alcohol in moderation. However, when it comes to incorporating additional nutrition in your diet, you should err on the side of caution and only consume dietary supplements after having it cleared by your doctor, as many more, not listed here, may interact with medications and/or promote disease activity. Overall, food is not a substitute for medicine.
(Note: contrary to popular belief, the consumption of red meat, gluten, artificial sweeteners, nightshade vegetables, legumes, and soy products do not play a role in disease activity. Go enjoy your mapo tofu with real beef or TVP, a delicious boozy tiramisu, and a no sugar Coke!)
Quit Smoking: Cigarettes are bad in general, and I know it's very difficult, but try to quit any way you can. I smoked between 2010 and 2015. Quitting was the best thing I did.
Oral Contraceptives & HRT: While it's unlikely, make sure your oral contraceptives/HRT aren't messing with your disease activity. This is something to discuss with your doctor. Of course, it's always a benefit vs risk situation and will differ for different people.
Pain Management Techniques: Mindfulness techniques and physiotherapy are very useful when it comes to pain management, however, I highly recommend seeing a multidisciplinary pain clinic for this approach. My team have been very good and have completely changed how I perceive my pain.
(Note: mind you, if they try to dissuade you from taking pain relief before anything else, run/hobble/wheel yourself the other direction, fast. Learning these techniques may lead to not needing to take as much pain medication, but meditation and exercise are NOT replacements for pain medication.)
Avoid Pseudoscience/Snake Oil: You really need to avoid all the woo woo and other nonsensical rubbish that claims it will cure or improve autoimmune disease with herbs, pretty magic rocks, essential oils, pseudoscientific devices, and sugar pills. These are not scientifically proven and some can even cause damage and/or death. I know it's easy to get desperate and seek medical alternatives, but remember, the people selling you these are often predatory and/or deluded. Having said that, you CAN use some alternative therapies to complement medical treatment, I highly recommend massage for sore muscles, but always clear it with your doctor, and do not use it as a substitute for medical advice.
(Note: if they try to play the "Big Pharma" card, remind yourself that the wellness industry rakes in billions of dollars every year from the sale of unregulated (and sometimes outright illegal) goods and services, more often or not, culturally appropriated from Indigenous groups, for massive profits, very little of which go back to support those communities they're exploiting. They aren't there looking to help you, they don't care about helping you. "Big Pharma" might not be perfect, and yes, they also rake in billions, but at least they follow the scientific method and are held to strict regulations.)
Avoid extremes (or at least try to): If you experience Raynaud's Phenomenon or have issues with heat, this applies to you. Of course, it's usually very difficult to manage the weather if you live in a region known for extremes, and while acclimatisation and proper architecture definitely help, sometimes you still have to brave the outdoors. The heat can cause unpleasant symptoms, and it's hard to go out during the day, but the cold can be quite terrible too. Running hands under warm water or holding a warm cup of tea can help prevent tissue damage from the lack of blood flow when indoors, but you should be wearing thermal protective gear outdoors. The chronic illness community kind of have a joke that we are walking barometers, and in my case, I can attest to that, even if it's just a placebo effect.
Mobility Aids: If you have any kind of joint involvement, invest in mobility & accessibility aids such as jar openers, arthritis gloves, compression garments, adaptive clothing, etc. Some items may even be subsidised with government and non-government funded schemes (e.g. health insurance), and you may be eligible for disability support payments and/or services, depending on qualifying criteria.
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Disability
While Lupus often looks invisible from the outside, it is considered a disability. If we look at the two models of disability, we can see why.
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| Image description: A Bitmoji of Lara against a dark blue background. There are rating stars below displaying a rating of 1 out of 5 and white text beneath that reads “Would NOT recommend”. |
Under the medical model, Lupus is the problem. Arthritis can limit mobility, pain & fatigue can limit daily activity, sun exposure can mean a flare up, the cold can make things hurt more, you get infections very easily, etc. These are to be expected.
Under the social model, Lupus isn’t the problem, an ableist society is. This can be the physical barriers (like inaccessible buildings), but we have to talk about the social ones too!
- Gaslighting “but you don’t look sick/disabled” commentary (what does sick or disabled look like, Karen?)
- Social isolation when your so-called “friends” stop talking to you because you "bring them down" or cancel on them all the time (thanks for having my back)
- Having to travel long distances or to inaccessible places for medical care (especially for regional and rural people)
- Being made to provide a doctor’s note each time you miss work or school despite providing evidence of having a disease of an unpredictable nature (it's a DyNaMiC disability)
- Being expected to “get better soon” (like, what part of "chronic illness" and "permanently incapacitated" do you not understand?)
- Attitudes like “the virus only kills the old and sick” (thanks for being a eugenicist twat)
- Getting stared at when you use the disabled parking bay, even if you have a permit (the bane of every ambulatory disabled person, ever)
- Get abused for daring to call yourself "disabled" because you can sometimes walk (I mean, I get told to exercise, but okay)
- Being made to stand outside in the sun when queuing up; not being offered a seat!
(Note: Check out these two blog posts I did a while back:
10 Shitty Things Nobody Tells You About Life With Chronic Illness
10 More Shitty Things Nobody Tells You About Life With Chronic Illness)
Spoons?
Before I get to the raw part, I’d like to mention the Spoon Theory. Christine Miserandino from butyoudontlooksick.com came up with it to describe her daily life with Lupus. It was adopted by the chronic illness community (Spoonies) to describe dynamic disability and varying energy levels.
Spoons!
Ready? The reality of the matter is that I have been in medical retirement and surviving on income support since losing my last job the age of 22. I’m 33 at the time of writing this and will never regain full health nor work a typical job/return to study again (no, not even part time). My mobility and energy levels vary day to day, I cannot tell you how I’ll feel tomorrow, and taking care of myself (and my household) is a full time job in itself.
I’m stuck with this, it won’t go away, it’s not a personal failure, I don’t need advice, sympathy, yoga or crystals. I’m just one disabled person with my own support and access needs.
As for how it affects me, I get flares from time to time, like the other day when out of nowhere, I felt very fatigued and every joint from my waist down was throbbing. For the first time in a long time, this was the reason I couldn't walk (rather than migraine induced weakness). I also noticed my cankles came back. Right now, as I am adding to this post, I can feel my knees and ankles aching. It's quite a different pain from when your muscles are aching from exercise. The only exercise that doesn't aggravate anything is a gentle stroll through the park with my dog (only when I am not fatigued and have take adequate pain relief).
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THAT'S LUPUS.
Thanks for sticking around to the end! Have a photo of Byron.
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| Image description: Byron, a black and white border collie dog with long fur and freckles, sitting on the grass mid blink. |
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