When My Illness Makes Me Feel Bitter and Selfish

My EDS and associated conditions have become a bigger and bigger factor in my day-to-day life over the last few years. There are days where my pain affects me to the point where I struggle to care for myself, and other days when I’m tired to my core and I find myself falling asleep in public.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A few years ago, myself and my partner came to the difficult decision that work was not possible anymore. I spent the first year fixated on a goal of being back in work as soon as possible. I had pain clinics, podiatrists, physiotherapies, structured exercise and CBT. I had a GP that was fantastic and worked with me to find the right pain management. I worked harder than ever before to reclaim my life. During nights of pain, I spent my time reading medical papers, support pages, advice blogs and finding as much information as I could about my own body.

But a change has crept up on me while I was focused on making myself as great as I could ever possibly be. I do, of course, have those days where I am angry at my own body – when I can’t wash my hair or pull on a T-shirt. But I now have a different, deep-set frustration at those around me and it’s incredibly unhealthy.

I get angry when my friends complain about being tired or having had a long day. I make the appropriate sounds of understanding, but in my mind, I’m screaming “You have no idea what tired means! Try a day in my shoes!” I am too wrapped up in my own exhaustion to recognize that the people in my life experience fatigue too. I forget it is all relative – a normal day for me may be the worst for someone else, but that doesn’t take away that they may be having a terrible day. The same goes that my worst day may seem like a dream for a person with a more complex condition than mine – it doesn’t mean my pain and fatigue mean nothing.

I get bitter when I see someone waste an opportunity. If only they knew what a joy it would be to stand without getting dizzy, or to exercise without fear of subluxation. I would be outside every single day, my home would be picture perfect – I’d take pride in my ability to clean without painkillers – and I would have the career of my dreams. I have no right to criticize how the healthy live their lives. Plus, this mindset has no positive impact in real life, just puts me in a foul mood and uses some of my own precious mental energy that could be spent on a hundred other things.

Or on other occasions, loved ones will attempt to share a story or experience, and I will invariably find a way to link it back to me and my own struggles. I put it under a guise of wanting to help, or to show that I do care, but the reality is I just need to prove that I have pain and they should be grateful.

I also find myself automatically expecting more from my loved ones. I struggle to find the balance between asking for help and feeling entitled to more attention, more understanding and more patience, just because I’m the one with the health condition. I have found myself snapping back with phrases such as “Well you don’t understand what I go through every day” and “You wouldn’t act like that if you were in my pain.” It is a get-out-of-argument-free card, a go to response that is impossible for them to argue with. I am thankful and grateful and say it daily, but I seem to think this is enough. It would be no easier to watch someone go through it all, to never know what help to give, and to do twice as much at home and work. My condition affects everyone around me; they need understanding and patience from me too.

Just because I have EDS, and that causes me no end of issues, I still want to support others in their lives, I want to be the friend that can show empathy not jealousy. If my boyfriend has a terrible night’s sleep, I don’t need to tell him why my one was worse. He already knows my problems firsthand. I will get a huge amount of love and understanding without me needing to prove to myself and others that I have had a bad hand in life. I have enough battles daily, I don’t need to create new ones.

I find it incredibly easy to listen to and genuinely help others who are in the same position as me – but a person shouldn’t need to have a chronic condition for me to listen to their worries without anger or jealousy.

I haven’t yet figured out just how I’m going to change all this, especially when balancing anxiety and low moods at the same time. I don’t want to compete with my loved ones about who is the most tired, or the most in pain, or having the worst day. Instead I want to be there to listen to their pains and worries too without jealousy. I want to be honest about my struggles, but then listen without anger. More importantly though, I don’t want to put down other people’s happiness. Next time a friend phones nervous about an interview for a big job opportunity, I want to feel truly happy for them, rather than my first thought be about my own missed chances. My EDS is making me selfish, but that is a side effect I can do something about.