Here’s a list with a difference. If you have Lupus, chances are you know all the signs, symptoms and statistics.
I was just sat thinking about the things you don’t see on the medical sites and in the medical books. What are those other things that also occur when you have Lupus?
1. When people say that they “suffer with Lupus” – suffer isn’t just a verb.
Suffering can take many forms; in my experience, the suffering is physical and emotional. I ‘suffer’ with chest pains, joint pains, widespread body aches, sickness, dizziness, headaches, psychosis, fatigue, depression…
I ‘suffer’ emotionally knowing that I will most likely have this forever.
2. You rarely just have Lupus and Lupus alone.
For me, its fibromyalgia and depression. For others, there are overlapping conditions like sjogren ’s syndrome, scleroderma, rheumatoid arthritis or Raynaud’s disease.
3. People with Lupus can often be registered disabled.
When Lupus affects your mobility, you can apply for a Blue Badge. In the UK atleast, if you qualify for Blue Badge, you have the parking rights as any other person with a disability. Many people don’t know that the Blue Badge is for disability and long term sick – not just for wheelchair users.
4. Lupus can be scary as f**k
Pain can come on suddenly causing stress and panic. Lots of us regularly end up in hospital for all kinds of pain and again, a hospital atmosphere can be scary at the best of times.
Knowing that you lack control over your health may be one of the scariest things ever. It’s something I absolutely took for granted before my diagnosis. I often sit and think about how many medical professionals look after my health and I’ve put 100% of my trust in them. However, knowing that someone has your life in their hands is scary.
5. Don’t expect all medical professionals to know about your illness.
Don’t assume that the doctor you see in A&E will even know what a lupus is. I’ve experienced this atleast 3 times. Your GP may also lack knowledge about your condition. My nurse specialist explained to me that in most GP surgeries, there may only be 2 patients with Lupus out of several hundred. There are also hundreds of autoimmune related illnesses so bear that in mind also.
6. Living with Lupus means living with Lupus.
I’m still finding my feet with this illness and I’ve been living with my diagnosis since 2004. Illness is a lifestyle (for me anyway) By that I mean I’m always balancing my illness with everything else going on in my life. I know that Lupus will always be a part of me and brings a range of barriers and restrictions. For example, I’ve accepted that pain is a way of life for me now, so is fatigue, so is depression, so is medication and so forth.
7. The Lupus community is bigger than you think.
Being ill can be very lonely; even if you’re lucky enough to have a great support system of family and friends.
We created Sick of Lupus to unite Lupies all over the world. (The phrase Lupies was not created by us!)
Social media is an amazing tool allowing us to network and support eachother. I’ve seen so many profiles on Instagram, groups on Facebook and pages on Twitter that show how strong we are as community. We’re amazing at sharing information, advice and stories as well as forming friendships based on a very special common ground.
8. Fatigue can be absolutely debilitating.
I can’t verbalise just how severe fatigue can be. The word ‘tired’ just isn’t enough to describe how it feels to have fatigue. It’s like having flu, jet lag and being dosed up on sleeping pills at the same time. All day, everyday.
9. Pain becomes a way of life
There’s no escaping it, pain will be a part of your life. It can take many forms but unfortunately, it will always be there. It’s important to get help in managing pain if you’re struggling. There are lots of resources available to you that you may not know about. I had 13 sessions of treatment at pain clinic as well as attending Lupus education programmes.
You can also try alternative therapies, mediation and graded exercise. If you’re dealing with emotional pain, it’s equally important to seek help. (There’s a blog in the SOL archive about depression if you want to take a read)
10. Despite everything, Lupus can be totally invisible to others
This can be a blessing and a curse. The butterfly rash is arguably the most identifiable Lupus symptom but not everyone has this. I don’t think I’ve ever had any visible symptoms, even during my most severe flares. On one instance, whilst waiting for test results at hospital, the doctor said, “Do you mind waiting out in the reception area? You look fine to me” – 2 hours later, they told me I had pneumonia.
11. All of the above can make you stronger.
When you consider all that you have to deal with, you can see how living with chronic illness can strengthen your character. Lupus is always with you and can be completely unpredictable. It can stop you in your tracks, ruin special plans, affect relationships, force you to settle, cause endless tears – but after all of this, you pick yourself and start again.
I think illness forces you to see things from a clearer perspective – from a place of gratitude. You feel grateful for the days that you have little to no pain, for the days that you’re able to get out of bed.
I feel more empathetic towards other people and I feel more informed about invisible disabilities. If I wasn’t going through this, would I care about things like this?
I’ve heard people say that what doesn’t kill you make you stronger; for now, I think this sums things up perfectly.
Thanks so much for reading.