Five things I don't tell people about living with chronic illness

Five things I don’t tell people about living with chronic pain

It’s hard to explain what it’s like to live with chronic pain, and a lot of the suffering is hidden behind closed doors. Laura’s Pen lists five things she doesn’t tell people about it…

Chronic pain is a funny thing. Every time my pain escalates I think I’ll never be able to cope with this pain. Then it becomes my normal and I find a way to cope.

That doesn’t mean I’ve got used to pain. I’ve just got used to coping with pain.

I suffer from Endometriosis and Fibromyalgia and, together, they make a killer team.

But, I talk about my pain so little (ok, maybe not so much on this blog!) that I find people are shocked when I do start describing it.

So, I thought I’d share some of the things I hide from (nearly) everyone but my partner.

At the moment I’m definitely going through a bad patch, so these things describe what’s going on now.

Here we go:

1. I’ve used hot water bottles so much I burnt my skin

There’s a special type of burn called Erythema ab igne. You get it from long-term exposure to heat. Usually, the cause is hot water bottles or laptops. It changes the pigmentation in the skin, so I now have a weird grid pattern on my skin.

I knew about this burn before I noticed the grid pattern because my mum got it from using hot water bottles for her chronic back pain. But I went on using mine regardless because it helps the pain a lot.

My burn is fading, but that’s because I’ve stopped using heat for the last month or so. I’m using ice instead, which doesn’t give me as much relief.

2. The pain is sometimes unbearable

I get waves of pain sometimes in my belly that double me over. Last time it happened, I was hunched over grabbing my belly and gasping, trying to figure out if I could move enough to get on the floor.

I did, and then I knelt in a ball on my kitchen floor for several minutes until it calmed down enough that I could move again.

This always happens in the evening, don’t ask me why, and results in my base level of pain being heightened for the rest of the evening.

3. I sleep on ice packs

I shared this on Instagram recently. I have seven ice packs now. Two are to put under my shoulder at night. Without them, I cannot sleep. Heat patches work too but it gets expensive putting four heat packs on every night.

But what if I don’t fall asleep right away or something wakes me up? Well, then I need to change the ice packs, so I need another two on standby.

The last two are for my endometriosis pain, and I often use these just before bed, so all six are often used at night.

The last one is a spare because one burst and I need them in pairs to cover enough of my back/shoulder.

4. When my pain flares my whole body hurts

My Adenomyosis/ Endometriosis pain has been so bad recently that it makes my whole body tense.

Now, I already have pain issues in a lot of my body (thanks, Fibromyalgia), so the extra tension makes these flare too. I end up in bed breathing deeply trying to get my body to relax.

This isn’t every day, but it’s happening a lot lately.

5. I don’t always cope with pain

I’ve got into a routine that helps to manage my pain. But when my pain flares and lasts days and days it seriously affects my mental health.

My partner will attest that I get very quick-tempered, snappy and generally grumpy when I’m having a bad patch and depression definitely kicks in.

Or.. I’ve found lately, when my pain is so bad my whole body feels tense, the depression is swapped for anxiety, which doesn’t help with trying to relax.

So next time I tell you I’m fine, or my favourite answer of “I’m plodding along”, know that this is what I’m hiding.

But also know that I’m hiding it for a reason. You are a great distraction from the pain and I want to enjoy your company.


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Five things I don't tell people about living with chronic pain

Laura Chamberlain

<p>Laura is a writer blogging about living with chronic illness, namely Lyme Disease, Myalgic Encephalomyelitis (ME/CFS) and Fibromylagia. </p>
<p>She likes food, cats, bad jokes. Unfortunately, her boyfriend is allergic to the last two…</p>

2 Comments

  1. “I don’t always cope with pain” is certainly one I can relate to very well, both in terms of not dealing well sometimes and getting very low, very frustrated, and because I hide it and pretend around others so as to enjoy their company or not bring them down with me. Fantastic post, very honest and insightful. x

  2. I get the same with hot water bottles! While I probably don’t use it as often as you do, my skin has been thinned by steroids so the burn marks are worse by the month. x

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