Why I’m not “Zebra Strong” or a “Warrior” of chronic pain…

I, personally, don’t like referring to myself as a Zebra or a Warrior and here is why: It makes other people awkward and clam up when I need them to be open with me about my illness. It makes having this condition seem like being in a gang – a gang that none of us really want to be a part of in the first place. I think it makes discussing my Ehlers-Danlos Syndrome feel off limits to friends and family because being a “warrior” sounds so aggressive. Approaching illness or disability is terrifying for most people whose experience of mobility issues is usually the grand total of their 80 year old Gran who needs a walking stick or perhaps a wheelchair. They have never had to consider what it’s like at 27 for your whole world to be turned on its head. Everything is so uncertain and is going to be a massive uphill struggle, especially where it comes to work and having a family on top of the worry of how bad my pain will be tomorrow, next week or next year. I don’t know how to deal with this, so how could anyone else possibly know what to say or do?

It sucks, it’s painful, doctors are useless, the drugs don’t work, we lose our jobs and our friends, our bodies give up on us and we somehow still need to find the oomph to brush our teeth in the morning. It does feel like a battle. I just feel like calling myself a “chronic pain warrior” makes it sound sort of like I will ride in on horseback, Game of Thrones style, and behead anyone who crosses my path or says the wrong thing. That’s what friends and family fear the most – saying the wrong thing. My Dad loves me very much (and is massively helpful financially and by letting J and I use his car over summer) but he is the chief sayer of the wrong things and I think he’d admit this. It’s only because his (and most Glaswegians) way of cheering me up is and always has been to wind me up, but this doesn’t work so well when J is helping me up out a chair or I am having gynaecological pain he knows nothing about and that’s why I’m in my pyjamas and unwashed at 4pm. It’s because my lady bits are on fire, I’m assuming he doesn’t want to hear about that. I don’t take jokes so well that make light of my struggle… But I do make jokes myself about how ridiculous I look on this damn mobility scooter. It must be terrifying dealing with me because one day I am open to laughing at my situation and the next day I hate my life and cannot believe someone is making fun of me. Also literally terrifying because I am a bloody liability on the scooter…

scooter

While I battle my illness in my own way, everyone has their battles that other people know nothing about, are they all warriors too? While I like the Zebra name because of the associated anecdote, I don’t feel that I am “Zebra strong”. I’m strong because of me, my partner, my family and my friends and it has nothing to do with my EDS. Physically I am not strong. Mentally I am not all that strong, but strong enough. I manage because all of the people who care about me give me little bits of their inner strength and that allows me to carry on. I never want to describe myself in such a way that makes me unapproachable and causes my pillars of strength slip away.

zebra

If calling yourself “zebra strong” or a “chronic pain warrior” works for you, or means something different to you then that’s great. But I’ll stick to Ren or Lauren, I sometimes even answer to Laura or Lorraine too…

Ren x

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9 thoughts on “Why I’m not “Zebra Strong” or a “Warrior” of chronic pain…

  1. ZebraWitch says:

    This is all very relatable. I don’t feel like a warrior. I feel tired and fed up and moody with pain… and in all honesty, no one can say the right thing because my tolerance level for jokes or well meaning idiocy is often lower than I realise x

    Liked by 1 person

  2. Ms. Mango says:

    I love this. I agree, if it helps a person to identify with a strong warrior to get through it, all the power to them, but personally I don’t feel that way. I didn’t choose to have to fight every day to function and I don’t identify with my struggle that way. By the way, you don’t look ridiculous, though I’m sure it must feel that way while you’re getting through the adjustment period (I can’t even imagine). Those around you just have to learn to adjust as well while you’re learning to handle your chair being part of your identity and that good and humorous days along with bad and short fuse days will both be part of it.

    Liked by 1 person

  3. JPeaSmith 🇿🇦/🇦🇺♿️ says:

    Thank you as always for a great article but also your honesty about where you are at. I think that you will find that you are not alone and i see by the above comments that I am right. I think that it is really important for all of us to remember that each of us is at a different stage of our journey and that that means all kinds of differences not just the condition of our bodies. I have never used the word warrior but didn’t think that I had an issue with it either till I read your article and I think that the reason that I don’t use it is because while I am not against it as such, it is that it just doesn’t sit well with me either. I don’t feel that it represents me in any way. So thank you for (as you so often do) for giving me questions to ask myself 🙂
    Zebra Strong I love but for completely different reasons. I am a little older than you (in my 40s) and only got a diagnosis last year. I have had to fight the system and for my body and my health and that of my children my whole life. It has been an excruciatingly lonely uphill battle that I was losing. (funny that I have been in battle for so long and kinda won and yet still don’t feel like a warrior) but then when I found the zebra emblem (and have been collecting zebra things my whole life without knowing and it is my signature on all my artwork) it felt a bit like coming home, or finding your tribe. I totally agree that I hate having to belong to it but the loneliness and difficult journey have meant that when at last I found my tribe, I learnt very quickly what the hell was going on with me and it was that tribe that made a difference even though I didn’t know anyone personally. It is the words of you and others that spark things in me, make me question, and open doors. There was also a HUGE amount of conflicting information out there in different countries, but when the EDS society formed earlier in the year and pooled resources and had the symposium, I think that this is the biggest step towards making a difference ever. Zebra Strong being their logo, for me means strength in numbers. Strength in that team that none of us want to belong to. All EDSers belong to one tribe by what we have, but we can choose to gather in small groups, large groups, this group or that and that is totally valid for each and every one of us. For me, the timing in my personal journey means that Zebra Strong and the society that is actively fighting for so much, is something that I am proud to belong to, but I also get that some people don’t want to belong to them for all kinds of very valid reasons.
    So I hear you and support you 100% on where you are at. People often think that if we choose a certain path then we are judging those who make a different path and I don’t agree with that. I love that you are being brave on the path that works for you, it makes it real and that is one of your many great qualities. So stick to where you are at and if things change at some point for either of us then that is ok too.

    Liked by 1 person

  4. bowermanland says:

    I mis-read that as ‘Chaotic Pain Warrior’: that’s what I am. Only since last year, age 35, have I been able to talk to my Dad directly about some of the less glorious side effects of EDS. We’ve not talked about self-evacuation of the bowels, but nearly everything else has been covered. But we have always lived together and have an unusual relationship. However, I do treasure the fact that I can say to him ‘Fuck, I’m bleeding like a stuck pig and it feels like someone’s stuck a poker up my arse, now fuck off and leave me alone’: one day you may get here…. Good luck with the scooter. x

    Liked by 1 person

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