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EDS Awareness Month

Empowerment: finding your strength

For EDS Awareness Month, I’ve been thinking a lot about empowerment, inspired by the strength of communities who society often disregards as weak. Whether it’s hearing the stories of creative and resilient people, the positivity of #fragilebutunbreakable social media campaign, or watching the phenomenal achievements of the EDS community.  I am awed by this strength in the face of adversity.

Empowerment means many things to different people at different times. It can mean helping others find a voice and platform, or working out what you need to build yourself up. It can be physical, spiritual or mental. And it’s especially important for those of us living with chronic illness, such as EDS and hypermobility.

There’s no denying these conditions cause our bodies pain and can leave us exhausted, meaning we are unable to do things non-sufferers can. But that doesn’t mean we ourselves are weak. In fact, the reverse is true. Every day we navigate the physical and mental challenges of a world not yet designed to accommodate everyone. To me, that is true strength.

But we weaken ourselves further through the physical and mental pressures we add on top. We create false expectations of how and what we should be feeling and any ‘failure’ to live up to these makes us feel much weaker than we are. There’s a great need to empower ourselves by finding and growing our strength.

The events this month holds made me reflect on how to help achieve this, and I’ve come up with five ways to start:

1) Listen to your body – Although oftentimes it may feel like it, your body is not your enemy. Yes, it may cause pain or not be capable of doing the things you want, but it’s what will carry you through life and allow you to have wonderful relationships and experiences. So, listen to your body. If you feel exhausted, if you are hit with brain fog, if you’re in pain – you don’t need to push through. Take a break because it’s your body saying you need to. Your personal wellness journey is exactly that, personal. There’s no list you have to tick everything off, written by you or by others.

2) Pace yourself – With EDS it’s very common to crash and burn after a period where you feel really great. That’s because when we feel better we try and do that bit more, then pay the price later with pain and fatigue for days. It’s difficult but we need to learn to spread the load of tasks and balance our energy so we aren’t trapped in these destructive cycles. It’s ok to feel energised and not rush out to spend every ounce of strength. It’s all about pacing yourself.

3) Let go of the guilt – A massive drain on our mental energy is the heavy burden of guilt we hold on to. You need to remember that it is in no way your fault you are suffering this condition and you should never feel guilty for asking for help. And don’t feel guilty for taking time for yourself, either. You need to do what you must to keep your body strong in the present and the future.

4) Exercise – Empowerment also comes through physically exploring our strength. Exercise, particularly focusing on small movements, is great for those with EDS, allowing sufferers to gradually increase strength and range of movement. Start by learning how to move safely and well then, as your confidence grows, you can start moving more. However, do the appropriate amounts and types of exercise that best suit you, everybody and every body is different.

5) Journal – Keeping a journal of achievements seems simple but it’s very powerful. It doesn’t have to be every day but noting down successes of any kind or size is fantastic in reminding you how far you’ve come. Every small step adds up. It also helps give you perspective and also practice gratefulness, something which this condition frequently robs us of.

Wishing you a #zebrastrong month of May.

7 Comments
  • Manja Bitterlin
    Posted at 21:40h, 06 May Reply

    Yes. I totally agree. Nice to share.

    • Jeannie Di Bon
      Posted at 15:05h, 27 May Reply

      Thank you.

  • Katrina Marie Hornberger
    Posted at 13:47h, 07 May Reply

    Thanks for that. I try to do those things for myself especially because most of the people around me, even the most supportive people, don’t understand that what they see is not what’s going on physically and innocently they expect more than I can give at times. It makes me feel very guilty, then it becomes a mental emotional fight internally. I’ve learned over time to take time. I was diagnosed back when I was 12 and had my first surgery then. At this time, I was told I was the the first and only one diagnosed in my area and made the medical journal and both thumb surgeries were performed on closed circuit TV. Dr. Richler was wonderful and really focused, prescribing assistive devices, immobilizer’s, etc. kids can be cruel. Just saying. I’m 53 now and I’m having a hard time with the average things that come up with aging changes coupled with the more serious things that occur with EDS. Medical community still in a fog with this and get seemingly rather irritated with me because I advocate for myself. It’s hard to get what you really need if there’s no one on your care team who understands your condition or is willing to educate themselves ahead of time before they formulate a treatment plan. That’s very frustrating!! Thank you for letting me get that out to someone actually understands.

    Kate

    • Jeannie Di Bon
      Posted at 15:04h, 27 May Reply

      Thank you for sharing Kate. Sending you best wishes. Jeannie

  • Zinthia Michel-Kee
    Posted at 00:41h, 08 May Reply

    Thank you so much for this piece. I really struggle with guilt, and it’s reassuring to know that I’m not alone.

    • Jeannie Di Bon
      Posted at 15:06h, 27 May Reply

      Definitely not alone. I’m so glad this article helped. Jeannie

  • Guest Blog: Jeannie from Create Pilates explores movement and support | Jilla | The Blog
    Posted at 13:03h, 23 May Reply

    […] month Jeannie Di Bon, (movement therapist, Pilates Method Alliance, Pain Mgt for Hypermobility/EDS/Chronic Pain) and […]

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