LUPUS UK
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Letter to my partner about Lupus

Overdid it lately. Yesterday wasn't a great day. Partner came home knackered after after a scorching day at work (he's a roofer) he didn't say as much but I could tell he was frustrated that he'd been working hard all day and had come home to find me still in bed.

This morning we had a row. I ended up driving to do some errands for him to help him with his work and in the car I decided to write him this letter. While it may seem a little self-indulgent I thought I'd share it anyway...

My Dear,

In the time we've been together, we've not really spoken much about my Lupus. I was diagnosed before I met you and in the eighteen months we've been together I've been pretty well. I'm also pretty good at not talking, at avoiding difficult subjects. As a result we've never really had the What is Lupus conversation so I don't really know how much you understand about it.

Lupus is a complex multi-organ disease where a person's immune system as well as attacking infections, viruses etc.. becomes mutinous and attacks that's person own body tissue. The person with Lupus' body is like a country in civil war.

For some it can be completely devastating. For me (I'm lucky) the war doesn't always rage and a lot of the time there is ceasefire, or at the very least combat is mild enough so it isn't really noticed. In those times it may seem like there's nothing wrong at all. I will get up in the morning, get dressed, work, see friends, manage household chores, get on with my hobbies and do all the those things and plenty more much like anyone else does. I may even forget I have Lupus. I'll be ambitious and I may possibly do a bit too much. Then of a sudden, much like in any war, there'll be a trigger; for me it's summer- when the sun is stronger, stress and overdoing it. The tensions will rapidly escalate and suddenly all my available energy will be directed to fighting (and trying to resist) the conflict going on inside. This is called a disease flare. Simply getting up and getting dressed will seem like when we went on that last mountain walk in La Gomera and I took us the wrong way and we went round in a circle.

You found that excruciating didn't you, repeating that climb?

Trust me I understand why you seemed so annoyed yesterday that I couldn't bring myself to hang the laundry. It may sound utterly ridiculous but I had gotten up, brushed my teeth, watered the seedlings in the poly-tunnel and engaged my brain to think about some work. I even managed about ten minutes before shut down. I filled the washing machine and switched it on and that honestly was about all I could cope with. It's like that sometimes. When I am in flare-mode, those simple tasks that normally I wouldn't even bat an eyelid over are my up-and-down-a-roof-in-winter. You may not be able to get your head around it, and believe it took me a while as well. To let myself be tired without feeling somehow I was surrendering, not doing enough, being lazy. You know how happy I am when I am busy and conquering things. So I get it, it's frustrating.

It's ******* frustrating. When you shout and are disappointed, please remember so am I. But I've learned getting angry is pointless.

As cliques as it sounds it's all about the balance. As I said I'm lucky to have times where I feel well enough to be able to overdo it. And consciously, for now, I make that choice. The rough with the smooth.

You see there are the common battlegrounds in the lupus-induced civil war, these include include the joints (for me at the moment it's my hip and finger joints), and the skin. I think perhaps lupus antibodies like these because they are plentiful and maybe Lupus is smart, maybe it doesn't want to endanger the whole system unless it really has to. Effects of these common battles are pain, rashes, extreme tiredness and slowing down of mental processes (this morning you asked where my planning brain had gone!). You know that feeling when you are fighting a flu, how drained, achey, and crap you feel- part of why you feel that way is because your immune system is hard at work. Everyday Lupus is your immune system perpetually feeling a little over-stretched. A Lupus flare is when your immune system is flat-out and raging, overstimulated and still giving 200%.

The antibodies in a person with Lupus aren't necessarily predictable about where they choose to engage in conflict. The disease can behave in certain way for years and years and years and then of a sudden completely new battle grounds are forged and more powerful munitions deployed. The Kidneys, Heart or Lungs could be chosen. And that's a while new ball-game that involves hospitals and medications. Organ-involving lupus is treated, (so far there is no cure) with immune suppressants and low-dose chemotherapies, these you can imagine do not tread lightly on the already war-torn body.

I suppose to conclude this military metaphor having lupus it is a little bit like having millions and billions of microscopic despots- complete with nuclear arsenal- running free in the bloodstream and never being really sure when, where, how they are going to strike.

So far I'm lucky. My symptoms are pretty mild. If I listen to my body my periods of exhaustion don't last very long (A week, maybe two at the longest). I try to respect what is happening and I believe that by resting when I need to I am keeping my organs safe. It might be that when I sleep I am conducting my own peace-negotiations.

When I was diagnosed I had high-levels of the renegade antibodies, including particularly insurgent ones that are related to increased risk of kidney involvement. Which I why I meet with my specialist once year to check that everything is behaving itself. Again for most of the time I do actually forget all this I try not to talk about it because I feel normal and I have other things to talk about about.

But I'm not an idiot, I know it's there, and every now and again it does worry me. Every year when I have my routine summer flare I worry that this will be the one that will involve my organs and therefore stop me from living life the way I want to.

Also, and I think this is really important for you to know and to understand, that despite my silence I do feel like I am in a constant, daily state of war. This is my everyday normal. And when I go on about peace and calm, it's not because I am hippy, or I want to control your freedom to react to things. It's because I literally cannot cope with anymore battle and I refuse to let the outside world, the one I can control, mimic what is happening internally.

I love you.

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Hope that the letter helps, hopefully it'll stimulate some more discussion. Finger crossed for you.

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Hi Anjia, thanks for sharing this. I'm new to all of this. Your letter has given me yet mire understanding of the ups and gowns of this illness. I do hope your partner understands. I found a great video on the site that helped my husband increase his understanding of what goes on inside our Lupus bodies. I'll see if I can find it again and share it with you.

Good luck xxx

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lupusuk.org.uk/what-is-lupus/ Here's the link. If it doesn't work, you'll find it on the Lupus UK website under "What is Lupus".

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bless you xx

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Awe bless you. I guess sometimes you can only but try and get someone else to understand what you are living with. The fact those that suffer from these types of illnesses have good days, blinds those around us to understanding our bad days.

I’ve said before on here it’s like living with bipolar, you just never know what each day will bring and those around us do not know what form of us they will get.

I hope he takes in what you have written, and if not maybe he could talk to other sufferers to get an insight into your struggles .

May tomorrow bring you both a better day xx

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That’s a great very insightful letter. I’m sure our loved ones want to understand and I bet that letter really helps but I think it’s only our fellow soldiers in this war that really and deeply understand the battle.

X

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I hope it helps my lovely. I know and understand what you are going through. Take care x

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That was truly wonderful. I wish you well Anjia.. and maybe invite your partner to read some of the postings on here... to help him see you are not alone but also to empathise. So good to read you are putting in that boundary at the end.. our partners and loved ones must understand and care accordingly, and that's non-negotiable as we have enough to deal with. Best wishes. D

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I love your analogy of the civil war. I hope this very sensitive and open letter gives you and your partner a starting ground for some clear understanding of what you deal with every day. Panda x

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Can I copy this it's excellent at explaining lupus thankful like you Ive no organ involvement as yet

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of course :)

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Thank you 😊

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thanks you all. he gave me a big hug. i think we made a positive move forward. take care everyone and don't forget your factor 40 :)

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