30 Things About My Invisible Illness You May Not Know

In celebration of World Lupus Day, I have answered these questions that were originally used in blogs for invisible illness week. They’re a bit of fun, and a good way to show how living with chronic illnesses is different for everyone!

1. The illness I live with is: 

Systemic Lupus Erythmatosus. An autoimmune disease in which your body can’t tell the difference between a virus and your own tissue and organs, so attacks everything. It causes things like joint pain, fatigue, hair loss, anaemia, nose and mouth ulcers, rashes, and can lead to serious organ complications.

2. I was diagnosed with it in the year:

2016.

3. But I had symptoms since:

I first developed serious joint pain that affected my day to day life a year and a half before that, but some symptoms such as Raynauds Phenomenon I had for years before.

4. The biggest adjustment I’ve had to make is:

Being organised. No lie, I’ve learnt not only do I have to memorise all the names of my medication, but also the dosages. I need to keep all my medical records safe to take to every appointment. I keep a little notebook to keep track of symptoms, prescriptions, and any questions to ask doctors. I used to love just winging life and playing everything by ear. Not anymore.

5. Most people assume:

I have no idea. That I’m unusually pale? Bright red cheeks from being embarrassed for no reason? Lazy? Probably lazy.

6. The hardest part about mornings are: 

When I wake up and my entire body aches and feels too heavy to get out of bed, or I find it impossible to stay awake for more than five minutes. I have to slowly move my limps to gradually get myself out of bed, or quickly check something like Instagram just to help wake myself up and feel reconnected with the world (on these days even looking at Facebook feels like too much effort).

7. My favourite medical TV show is: 

Scrubs. Because a comedy with little life lessons is always fun, but I did get into House for the lupus references. Last two seasons weren’t much though.

8. A gadget I couldn’t live without is: 

Erm my mobile phone but that’s nothing to do with lupus. Does my pill box count? Helps keep me organised and the days I think “Did I take my medication?!”, well I can find out.

9. The hardest part about nights are: 

When the medication is keeping me up until about 6/7am, and I have a busy day the next day to get through.

10. Each day I take:

10 pills & vitamins. Gradually reduced from over 20, so that’s something!

11. Regarding alternative treatments I: 

Natural help such as diet adaptations and herbal teas I fully support, or anything that helps the person feel good. I also advocate things like drinking water if you have a headache etc before taking minor medicine. But never in replacement of the actual medicine that is needed to stay alive.

12. If I had to choose between an invisible illness or visible I would choose: 

Invisible. I’m grateful I can still feel normal and hide it. I have extra respect for those with visible illnesses as they still define themselves on their own terms and live their lives to the fullest.

13. Regarding working and career: 

I worry if one day my lupus becomes worse I’ll have to quit a career I may love. Having a career to be proud of is a huge life goal of mine, so I would hate to have a job I love but that makes my lupus worse.

14. People would be surprised to know: 

After first being diagnosed I got scared, angry and upset a lot. I tried to maintain a positive attitude to not freak others out, and to help myself deal with it better. Nowadays I can laugh at jokes about lupus, and wish there were more.

15. The hardest thing to accept about my new reality has been: 

The way I feel it defines me even when people don’t know I have it. It has altered my appearance to the extent I am uncomfortable with it, sometimes I want to yell out how these chubby cheeks aren’t usually me. I also have to be extra cautious – will a night out with friends make me feel worse? Will a cold hospitalise me? Also how I have to plan my future around it – certain countries I may not ever be able to live in or visit because of the insurance/vaccinations, or that I really should stick to doctors I know and who know me. I have to put lupus first to be able to enjoy life to the fullest – I miss the carefree days that should come with your twenties.

16. Something I never thought I could do with my illness that I did was: 

Begin my masters degree in a foreign country only 4 months after being hospitalised and diagnosed – I thought I’d be stuck taking another gap year and hating it.

Also being able to travel (albeit short trips), but I managed three trips in two weeks, just had to sleep a lot in between them.

17. The commercials about my illness: 

Well they don’t exist. I wouldn’t mind seeing some advertisements for lupus charities, even just to see some in doctor’s waiting rooms.

18. Something I really miss doing since I was diagnosed is: 

Being spontaneous. Every time I make plans, whether it is a day out, a trip, or a party, I have to think about how it will affect me and my energy levels, and will I need to recover sooner than I will.

19. It was really hard to have to give up: 

Instant noodles. They have no nutritional value so they’re one of many foods I do my best to avoid, no matter how easy they are to make. And oreos make me feel terrible. Also drunk cigarettes (don’t judge me!), they make my breathing awful the next day but try explaining that to me after a bottle of wine…(and don’t start on how I should cut back on drinking…)

20. A new hobby I have taken up since my diagnosis is:

Blogging about lupus? It’s funny seeing how my blog has changed and evolved along with me. But I am glad lupus hasn’t prevented me from my old hobbies of travel and photography.

21. If I could have one day of feeling normal again I would: 

Go sunbathing. I miss having a decent tan and I am done with people calling me pale. I do go anyway, but I always feel horribly fatigued for a few days afterwards, to the point I struggle to focus on anything. I would also eat alfalfa sprouts because although I have never eaten them, now I know I can’t I really want to try them. But first and foremost I would go and donate blood – I can’t because of my blood transfusions but I would love to have the opportunity to give back.

22. My illness has taught me: 

Life is tough, but people are tougher. And the people that matter will always be there for you. And that fully vegetarian/vegan meals are a delicious energy boost.

23. Want to know a secret? One thing people say that gets under my skin is: 

“Urgh I have a cold”. No, sorry, but I don’t feel sorry for you if you constantly complain (complain a little, colds suck, but don’t ever not bother to ask how I am then expect sympathy for the sniffles).

24. But I love it when people: 

Just say little things that they probably don’t realise make me feel cared for, e.g. when they ask if I want to sit in the shade, and I didn’t realise they knew I have to avoid the sunlight. Or ask how my doctors appointment went, or wish it goes well for me. Little gestures mean everything.

25. My favorite motto, scripture, quote that gets me through tough times is: 

My favourite musician Frank Turner has a song called “Get Better” which I listen to when I’m down about lupus. He sings “We could get better because we’re not dead yet” which plays into my odd sense of humour – we fight this illness every day and win.

I wrote a post about Maya Angelou quotes which I feel apply to lupus.

Rupi Kaur has a simple poem with the lines – “and here you are living despite it all”, which I think can apply to anyone, including us lupies.

Also when I wrote about post after being diagnosed someone commented to give me the quote by Kurt Vonnegut which I thought was a lovely gesture and so I treasure this quote:

“Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.”

26. When someone is diagnosed I’d like to tell them: 

The only direction is up. Things will be okay. Things will even be normal. You can reclaim control over your body.

27. Something that has surprised me about living with an illness is: 

How many things I took or started to take for being normal, are actually the result of lupus, and that it’s not normal to put up with. Or the days I have slept 10 hours, drank one or two cups of coffee and still wonder “WHY AM I SO TIRED?!” Then I remember. Oh, hey lupus.

28. The nicest thing someone did for me when I wasn’t feeling well was: 

Friends baked me apple pie and visited me all the time in hospital. My old work coordinator took me to every hospital appointment and brought me food. Distant relatives and friends of parents ask after me. An ex boyfriend’s mum has left me Facebook comments wishing me well (which is sweet because her son was never the most supportive when I was ill and we personally don’t stay in contact). My parents and grandmother flew to Spain to be with me when I was in hospital. Other friends invited me to visit them, or sent me cards from their homes in the UK, Norway or Canada. To say I am lucky is an understatement.

29. I’m involved with Invisible Illness Week because: 

Well I’m not, this is for fun. But anything to raise some awareness!

30. The fact that you read this list makes me feel: 

Supported. Especially if it’s by anyone I know (hellooooo). If it’s read by anyone else with lupus I hope you can feel a sense of familiarity, or a sense of not being alone. It’s why I enjoy reading lupus blogs – it’s a community of fighters.