For as long as I can remember, I’ve loved putting things together. There’s something incredibly satisfying about opening a flat-pack box, laying out all the pieces, and methodically building something from nothing. IKEA furniture, in particular, was my guilty pleasure—I relished the challenge of following the instructions, slotting pieces into place, and standing back to admire a completed project.
But then, my body had other ideas.
The Reality of Ehlers-Danlos Syndrome and Hypermobility
Living with hypermobile Ehlers-Danlos Syndrome (hEDS) means my joints don’t behave the way they’re supposed to. The connective tissue that should be holding everything together is too lax, making my joints unstable and prone to partial dislocations (subluxations) or full dislocations. Over time, the cumulative damage and chronic pain have made even simple tasks—ones I once took for granted—nearly impossible.
DIY, which once felt like a small act of independence and creativity, now feels like a test of endurance and a reminder of the limits my body has placed on me. Holding a screwdriver at the wrong angle can leave my wrist unstable for days. Lifting something slightly too heavy can mean hip pain that lingers for weeks. And if I spend too long in one position, my muscles tighten in protest, making movement even harder.
The Mental Health Toll of Losing What I Loved
One of the hardest things about chronic illness is grieving the person you used to be. It’s not just about the pain or physical limitations—it’s about the identity shift that comes with it. I used to be the person who could get things done, who enjoyed problem-solving, who felt a sense of accomplishment when I’d finished a project. Now, I have to ask for help, or worse, leave things undone because my body simply won’t cooperate.
There’s a frustration that comes with knowing what you want to do but not being able to do it. It feels like being trapped in a body that no longer aligns with your ambitions. The world around me hasn’t changed—I still want to assemble furniture, hang shelves, and rearrange rooms—but my ability to interact with that world has shifted. And that shift can feel isolating.
It’s easy to fall into the trap of self-criticism. Thoughts creep in: Why can’t I just push through? I should be able to do this. I used to be able to do this. But I’ve learned (and I’m still learning) that holding myself to past standards is not only unfair, it’s harmful. My body now requires a different approach, and adapting to that is not failure—it’s resilience.
Coping Strategies: Finding New Ways to Adapt
While I may not be able to tackle DIY in the same way, I’ve found ways to work with my body instead of against it:
1. Pacing and Positioning – Instead of pushing through pain, I now break tasks into smaller, manageable chunks. I take frequent breaks, listen to my body, and adjust my posture to reduce strain. Sometimes that means sitting on the floor to put something together rather than standing in a way that puts pressure on my joints.
2. Asking for Help Without Guilt – This one is still a work in progress, but I’ve learned that asking for help doesn’t mean I’ve lost my independence. Whether it’s my husband or a friend, involving someone else doesn’t take away from my contribution—it allows me to still be a part of the process in a way that works for me.
3. Using Adaptive Tools – There are tools designed to reduce strain on joints, such as ergonomic screwdrivers or automatic drills that require less force. Finding ways to modify how I do things makes tasks more accessible.
4. Letting Go of Perfectionism – Some days, I simply have to accept that my body won’t let me do what I want to do. And that’s okay. I remind myself that my worth isn’t tied to productivity or physical ability—it’s in who I am beyond what I can accomplish with my hands.
Reframing What DIY Means to Me
Though I may not be able to build furniture like I used to, I still find ways to be creative. I might guide my husband through the assembly process, offering instructions while he does the heavy lifting. I might focus on the organisational aspect—deciding where things should go, planning layouts, or making spaces functional in a way that suits our needs. I still contribute, just in a different way.
I’ve also found that shifting my focus helps. Instead of dwelling on what I can’t do, I remind myself of what I can do. I can still write. I can still create. I can still be present for my family in ways that matter. And while it’s not always easy, I’m learning that my value isn’t diminished just because my body has changed.
A Message to Others Struggling with Chronic Illness
If you’re feeling the loss of what you used to be able to do, know that you’re not alone. It’s okay to grieve. It’s okay to feel frustrated. But it’s also okay to adapt and find new ways to bring joy into your life. You are more than your limitations, and your contributions—no matter how they look—are still valuable.
Have you found new ways to adapt to physical limitations? I’d love to hear your thoughts. Leave a comment below and let’s support each other in this journey. And if you found this post helpful, please like and subscribe to stay connected.
References & Further Reading
• Castori, M., Morlino, S., Celletti, C., Celli, M., Morrone, A., Colombi, M., Grammatico, P., & Camerota, F. (2012). Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos Syndrome, hypermobility type). American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 160C(3), 190–204.
• Hakim, A. J., & Grahame, R. (2003). Joint hypermobility. Best Practice & Research Clinical Rheumatology, 17(6), 989–1004.
• Mastoroudes, H., Downey, C., Kevelighan, H., & Grahame, R. (2014). Hypermobility syndrome and chronic pain: An update. Pain Management, 4(6), 451-463.
• Schubiner, H. (2020). Unlearn Your Pain: A 28-Day Process to Reprogram Your Brain. Mind Body Publishing.
Describe the most ambitious DIY project you’ve ever taken on.
The bad and your parenting journey 