I have lymphoedema, but here's why most people won't know what I'm talking about

Emma Jane

Emma Jane

Fact: Since January, everyone in the entire universe has been pointing and jeering at the humungous lump in my groinal region.

"What a freak!" they scream at me from across the street. "She must have elephantiasis of the lady parts! Chuck her in a mid-16th century circus cage at once!"

OK, so maybe that's not a fact so much as a complete fabrication. But it is an accurate portrayal of how I feel right now, which is abjectly miserable, self-conscious, and socially dysmorphic.

What people have actually been saying to me since January is: "You've just been diagnosed with lympho WHAT?" (Usually followed by, "and we didn't even notice that lump in your daks until you got all shouty about it".)

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Ah, lymphoedema. It's a bitch of a thing. Even spelling it hurts. But given that this coming Sunday March 6 is World Lymphoedema Day, I've decided to come out as a lymphomaniac*. 

To mark the occasion, I will now answer some questions about lymphoedema that are not-very-frequently asked because – even though huge numbers of cancer survivors have this condition –hardly anyone talks about it. 

Q: Hello, there, lumpy lady. What is lymphoedema exactly? 

A: So glad you asked, concerned and empathic fellow human. Lymphoedema is what happens when your lymphatic system suffers an irreversible mechanical failure.

Q: And why does this matter? For instance, what has my lymphatic system done for me lately?

A: Bodies have two circulatory systems: a cardiovascular one which moves blood, and a lymphatic one which moves a fluid called lymph. If your lymphatic system busts, fluid pools in your arms, legs, stomach, groin, face, or wherever your problem area happens to be. While you may not notice the swelling at first, it can progress to a state known as "lymphostatic elephantiasis". 

Q: Holy living sailors. Are we talking The Elephant Man?

A: Kind of. As far as we know, Joseph Merrick didn't have lymphoedema. That said, left undiagnosed and untreated, lymphoedema can cause hard core changes to the way bodies look and feel.

Q: Jesus. That's awful. How do I make sure I never get this thing?

A: Oh, that's easy. Just ensure you don't happen to be born with it and don't ever get any type of cancer that requires treatment. 

Q: Lymphoedema has something to do with cancer? 

A: Lymphoedema has heaps to do with cancer. Conservative estimates suggest it affects 20 per cent of breast cancer survivors, 24 per cent of cervical cancer survivors, 9 to 29 per cent of melanoma survivors, and 36 to 47 per cent of vulval cancer survivors.

Q: Man. They are some serious stats. Also: didn't you and cancer have a thing going on a few years back?

A: Yes, we did. I had three operations for two types of cervical cancer. I lived but I also got lymphoedema. It's around the surgical scars on my abdomen and groin.

Q: It must really suck going through cancer and then getting diagnosed with this whole other crappy thing. 

A: It really does. It sucks so hard.

Q: How soon 'til you're cured?

A: Unfortunately, lymphoedema is incurable, chronic, and progressive. Getting diagnosed and starting treatment early, however, can be very effective at keeping the symptoms at bay. Management strategies include weight loss, special breathing and exercises, compression therapy and a thing called Manual Lymphatic Drainage.  

Q: That last one sounds painful.

A: Actually, it's not so bad. Two or three times a week I go to a clinic and an extremely sweet woman spends an hour sucking my skin with a "negative pressure" thingy and patting me like I am a cat. I also have a daily regime I have to do at home, including spending 40 minutes each night in a medical compression suit that inflates me into the Michelin Mam. 

Q: Sexy! What else do you have to do?

A: I have to wear constant compression over my puffy bits. I'm still going through the lengthy process of having a compression "panty girdle" custom-made and am making do with a bunch of bulky DIY options while I wait. 

Q: Is that what the lump in your pants is all about?

A: Yep. On a good day, my actual swelling really isn't so bad. But my DIY compression attempts can be seen from space. Beneath my trackie daks right now, I'm rocking five pieces of foam, multiple layers of compression bandaging, and two pairs of inside-out bike shorts. 

Q: That all sounds super full on. If lymphoedema is so common, how come I've never heard about it? 

A: Cancer tends to pull focus. Also, lymphoedema isn't a glamour illness. Celebrities don't discuss their battles with this particular bulge on red carpets. In short, it's outrageously under-researched, under-discussed and misunderstood – even within the medical professional. It would be ace if this could change. 

Q: Just to finish up, any general tips about how a well human could be kind to a not-so-well human?

A: You bet. You could read up on your friend's condition and ask interested questions. You could offer to hang with your friend at one of their endless medical appointments. You could be patient if your friend is grouchy, miserable or having existential crises because of the gross bad luck that is serious or chronic illness. You could make sure you never infer your friend brought this bad luck on themselves. You could donate dollars to medical research. You could be lovely to people whose bodies look kinda peculiar, regardless of the reason. And you could remember at all times that good health is a privilege and ableism really is a thing. 

Also, if your not-so-well friend happens to be a lymphomaniac struggling with body image issues, you could lend her some loose, bulge-friendly clothing accompanied by a "Sorry things are so shit" card. This is one of the things my kind friends did, and it really did make a difference.

* Not actually a medical term.

 

Dr Emma Jane  is Senior Lecturer and Australian Research Council DECRA Fellow. She will be appearing on the 'Women we love to hate' panel at the All About Women Festival this Sunday. Twitter: @MistyShouts