When the invisible disease becomes visible - the irony only you all will understand!

[Melba1]

As we all spend a lot of time talking about the many times when friends/ family (and doctors!) just can’t comprehend our diseases because of our invisible symptoms I thought I would share what has happened to me recently when some indirect effects of the disease have become visible!

The lupus in my nervous system has also been attacking my autonomic nervous system meaning I can’t control heart rate etc so I have been regularly blacking out. I haven’t learnt to elegantly crumple and seem to fall like a plank on my face 🙄😂 with subsequent bruises/ cuts etc.

Now these minor injuries are the absolute least of my worries as you will all understand - a bruise compared to the profound fatigue, a small cut compared to the constant joint pain, a black eye compared to my brain not being able to do the simplest thing yet suddenly I have a huge amount of sympathy and help - from friends, strangers and doctors! I have people bringing dinner, supermarket staff asking if I need help, doctors saying poor you. Husband taking on all of my jobs. All for a few bruises...

I tried to explain to my very close and lovely group of friends that these visible injuries are nothing compared to what we lupus/ CTD disease sufferers have to contend with every day but they didn’t really get it - just kept saying ‘but your face’ !🙄🙃 Even my amazing rheumy kept looking at me sympathetically and tutting at my face and saying we must stop this happening. I would put up with a constantly banged up face in exchange for even a quarter of the energy I used to have.

So maybe we should all join a boxing club so that we regularly have offers of help, empathy and some outward signs of the struggle we all have every day 😂😂

[CarolMcl]

Hi, I couldn't agree more with you. I was just speaking about that yesterday to another friend on this site. I said if we walked about in a cast or had a bandage on, no-one would even think or question your inability to do something. Yet when walking up a hill causes you to feel absolutely drained, having such painful joints, forgetting your train of thought or just feeling generally miserable it's a totally different story. And why..............because you look ok!!!

[Curly1430 in reply to CarolMcl]

Like I said carol once we get diagnosed we should be issued with a flashing nion sign for above our heads lol 😂 x

[leslieliesel in reply to Curly1430]

I feel like wearing a wolf shirt with Lupus written under the wolf!! xo

[Curly1430 in reply to leslieliesel]

No nion light 💡 ppl still walk past say wasn’t that a nice flashing light and it not even Xmas lol 😂 x

[whisperit]

Too too true x

[Hidden]

This made me smile Melba! I was hunting for visible autoimmune signs the other day to show the dermatologist on Monday (if only it was the neurologist instead for a good row!). Suddenly I had the idea to photograph my toes (and soles( when I get into the bath every evening to warm up. They go bright white like Raynaud’s and then my nails turn black. The vascular doctor said this shows the extent of damage that small fibre neuropathy has caused in my feet. So I showed my hubby these pics and he yelled “that’s awful - I had no idea - poor you??!!” Like when you write in lemon juice and use a flame to reveal it or use those invisible pens?

Ooh I’m suddenly very inspired! X

[Melba1 in reply to Hidden]

Yes even the best ones like ‘visible’ signs don’t they? Oh dear re your black nails/ white feet combo 🙁. You’re going to have to post a pic now as the image in my mind is a bit vampire 🧛‍♀️ like!

[Hidden in reply to Melba1]

I posted mine yesterday for someone on the Scleroderma & Raynauds HU if you’re a member of that community?

healthunlocked.com/sruk/pos...

[Melba1]

No, although I do have Raynauds so could justifiably take a peak at the funny feet if visitors allowed!

After posting this morning I have had my comeuppance for saying the facial injuries don’t bother me - had to go to bed this afternoon with a headache from the bump!! 🙄😂

[Hidden in reply to Melba1]

Aww poor you - facial injuries on top of invisible chronic stuff is not so great. And also could potentially be serious as the OT (a very elderly gent with a dodgy eye from shingles!) pointed out when I mentioned vasovagal syncope while in our ceramic tiled bathroom with sharp steel edges on bath- so no more jokes at your own expense eh?! Xx

[Melba1 in reply to Hidden]

Yes Dr Twitchy! I so want you to get your PhD so your neuro has to write to Dr Twitchy!! 🙂 My research group are encouraging me to do mine - possibly on lupus which would would be great but I feel the disease has reduced my energy and brainpower too far. The thought of us both writing to the rubbish/ arrogant/ wrong/ patronising/ dismissive (delete/ add as appropriate!) neurologists as Drs though is almost worth all the work 😂

[Hidden in reply to Melba1]

Well this thought is certainly keeping me awake for a few more hours a day! Xx

[ABecca9]

So well said! That’s why this community of support is so important. It’s hard for people to understand unless they can experience themselves. Take care.

[nancarolyn]

I get it completely. Most people assume that if you look good, you are good.These days I can only pretend I am feeling good for about 2 hours.I do not do long parties. Only for my children. Had to be there for my sons wedding. Just prayed to get through it and my doc helped . Take care and God Bless You.