On the occasion of World Lupus Day, celebrated this 10th May, I reveal 30 things you may not know about my invisible illness.
- The illness I live with is: Systemic Lupus Erythematosus (I also have Joint Hypermobility Syndrome and scoliosis!).
- I was diagnosed with it in the year: 2016.
- But I had symptoms since: Weird fact : In February 2016, blood tests indicated that I had lupus, but I had no symptoms at that time. The symptoms appeared a few months later, in July 2016.
- The biggest adjustment I had to make is: Pace myself. Fatigue is a constant symptom, and things get worse if I ignore it and push myself too hard. I have to carefully plan my activities and systematically include periods of rest in my schedule.
- Most people assume: not much, most people do not know about it.
- The hardest part about mornings are: Waking up and realising it’s a bad flare day. It feels like blocks of metal have been placed on each part of my body including my forehead, throat, stomach, arms, legs… and it requires a tremendous amount of effort to simply get out of bed and reach for my medications.
- My favorite medical TV show is: House!
When the team tries to figure out what’s wrong with a patient, someone will usually suggest that it might be lupus — probably because it is difficult to diagnose, because it has a wide range of symptoms or because it affects several parts of the body simultaneously — but “it’s never lupus”.
(Except in Season 4, Episode 8):
- A gadget I couldn’t live without is: Does my blanket count as gadget?
- The hardest part about nights are: Painsomnia. Being exhausted but too achy to fall asleep.
- Each day I take: 2 or 4 pills (I take some medications on alternate days).
- Regarding alternative treatments I: think they can be as important as medication, but it’s all about finding out what works for you or not.
- If I had to choose between an invisible illness or visible I would choose: I wouldn’t choose —I don’t think that there’s one type of illness which is preferable to another.
- Regarding working and career: I am lucky enough to be able to work full-time (which is rare for lupus patients). Lupus has positively influenced my choice of career as it encouraged me to reconsider how I really want to allocate my time and energy, and I developed a keen interest in non-profit organisations involved in healthcare.
- People would be surprised to know: that being in the sun can cause a lupus flare.
- The hardest thing to accept about my new reality has been: The unpredictability of lupus. I still have to get used to the idea that we cannot know how my lupus is going to evolve, which part of my body might be affected or how my life expectancy is impacted.
- Something I never thought I could do with my illness that I did was: live with it.
- The commercials about my illness: are non-existent!
- Something I really miss doing since I was diagnosed is: being in the sun.
- It was really hard to have to give up: certain ideals which I had assimilated as my own — thinking that my worth could only be determined by my productivity, that being ‘limited’ made me boring, that being sick made me unattractive and so on. It takes a daily amount of work to slowly get rid of that type of social conditioning.
- A new hobby I have taken up since my diagnosis is: blogging and learning about other health conditions.
- If I could have one day of feeling normal again I would: spend hours swimming while the sun is out.
- My illness has taught me: to slow down and open up.
- Want to know a secret? One thing people say that gets under my skin is: “You should not be eating that.”
- But I love it when people: ask questions or say that they’ve been researching my condition!
- My favorite motto, scripture, quote that gets me through tough times is: The song “Fix You” by Coldplay.
- When someone is diagnosed I’d like to tell them: Trust your own pace. It’s okay to go through a period of grief, do not expect to “think positively” right after being diagnosed with an incurable and potentially lethal condition. Listen to your body and speak up for yourself; you’ll receive a huge amount of (sometimes unsolicited) advice but you are the only one who knows what you are going through.
- Something that has surprised me about living with an illness is: how much you can feel that you are not ‘suited’ to live in this world, and how many efforts it can take to function in it.
- The nicest thing someone did for me when I wasn’t feeling well was: filling my hot water bottles, cooking something special, coming to see me at my place because I couldn’t go out… There’s an endless list of lovely things that my family and friends do.
- I’m involved with Lupus Awareness Month because: I hope it help others better understand lupus patients and their needs — I myself didn’t know about the disease before diagnosed, and it’s commonly referred to as a “cruel mystery”.
- The fact that you read this list makes me feel: grateful!