Today I am going to talk about something very difficult for me and something I have never shared before and I am going to do so because I am upset and kinda disappointed.

I had the dumb idea to search the hashtag #lymphoedema on Twitter last night and while I did read some lovely stories, I also came across an article that was supposed to ‘inspire’ me. Guess what? It did, but in the wrong way. The article was the story of a woman who got lumphoedema out of the blue, and is now trying to deal with it. To cope, she gave the affected limb the nickname ‘troll’.

Troll? Really? That makes me mad. I am going to TRY to compose myself though and write a post that makes sense. So, I will start with  some background info and then share my thoughts.

What is Lympoedema?

My explanation will be nice and simple because I am not a doctor, but a patient. This is how I understand it. So,  lymphoedema patients  have a problem with their lymphatic system. The lymph vessels do not work properly. They cannot move the lymph in the blood, so it builds up and that leads to swelling. The swelling can be mild or severe depending on how much damage there is to the lymphatic system. The end product? A big leg, hand or whatever. It is incurable, but manageable.  In order to treat your lymphoedema you wear compression stockings, get lymph drainage (massage) and wrap your legs with bandages (kinda Flinstone-ian- I know). Of course there is more treatment available, but the purpose of this post is not on how to treat your oedema.

Someone who does not know about lymphoedema, may think it’s only a problem that has to do with your appearance, but you can get very bad skin infections, when it is hot, it hurts, and the psychology of patients with lymphoedema is not always ‘oh what a wonderful world this is’. You see, you look at your health problem every single day. It is there. You see it. It does not go away and that is why I have a problem with the word ‘troll’ and using it to describe a lymphodema leg/hand (especially if it is going to be in a public platform and ‘disguised as an inspiration’. There are teenagers who have lymphoedema reading. It’s not OK.). When you have lymphoedema, you do not feel pretty. Trust me. I know. You feel insecure. So why ‘lymphoedema shame or leg shame?’.

My life

Well, if you see me, you can see my lymphoedema. I have lymphoedema of all four extremities. Hands and legs. I also have a bit in the face. I am a ball of swollen-ness (that is not a word) and  I look overweight (which I am), but there is a part of my big-ness which has to do with oedema (it’s not all kit kat folks).

Every day I wake up and wear my compression stockings. For 16 years my stockings have been my second skin. When it is 40 degrees, I wear the damn stockings. When I go to the beach, I wear the stockings. I have to, because when I don’t, my legs swell more, and I am in pain.

I haven’t worn a short dress since I was 8. I do not wear shorts and I don’t go to crowded beaches. I cannot deal with the comments/questions and stares.

What’s wrong with your legs?

Why do you need to wear those (those as in stockings)?

Or worse ones like

You need to lose weight

Lympoedema is not an easy thing. And to have someone call the affected leg a ‘troll’ as a nickname? Is that supposed to be funny? No. Not cool.

To the writer of the article

You must think I am nuts. I have gone all cray cray on you. You may be saying, “I am allowed to call my leg whatever I want to”.

You are actually.You can do whatever you want to cope with this big change, but please don’t consider it something that is horrible. I know this was not your intention, but don’t drag me down as well. Please don’t give your oedema such a negative name. You say you call it ‘troll’ because it is not like it is part of you (you are slim everywhere else). But it is part of you and it’s not a troll……

But

I am going to give you thumbs up for having the guts to take pics of your leg and share them. I cannot. I feel insecure. I cannot do it. So good on ya. You have actually pushed me to share this. You have also pushed me to provoke you. Is this ugly? Do you think I should call my hands my two little trolls? Do you like hearing me say it?

This is me

I have been dealing with this crap all my life and I cannot have someone who knows how I feel, consider a part of themselves or myself (by association) ugly, even if it is a joke/ a coping mechanism (if you wish).

I am trying to understand though. It must be very difficult to go from a fine, pretty leg to a swollen one. But your leg is not ugly. It is just not healthy anymore. You will not be able to cure your lymphoedema, but you will be able to manage it. There will be days where you will hate it, and you will ask ” why me?”, but you will get over it. You will get out of bed, kick yourself in the butt, and just go on about your daily chores and you will feel fine.

I know I will always have lymphoedema. I am OK with that, but  please don’t associate your lymphoedema, my lymphoedema with a troll. My post is not inspirational. It is a long rant, but bear with me.

For more on Lymphoedema, press here.

The article that got me fired up.

I am sorry if this post is all over the place. If you want me to tell you how I get treatment or my journey, let me know.

Jo

xx