As well as working full-time with endometriosis, somehow I find the energy and time to volunteer some of my time each week to a local community housing project. I’d be lying if I said the last year and a half I’ve spent doing this hasn’t been extremely difficult for me, but I’ve also met some amazing people and hopefully improved my local area in the process.
Working for free does require some different skills to my day job though – namely trying to persuade people to volunteer their time and keep them motivated and engaged while staying passionate about the work myself.
As it’s time I’ve given up out of my precious well time, volunteer work has only reminded me of some really important things about my illness and I thought I’d share them with you.
Everything doesn’t have to be perfect – just do what you can
There’s a real temptation in life to make everything as good as you can make it, but often at the expense of your energy and time. Sometimes you have to shave off that “extra mile” and save that “extra little bit” for your recovery after toiling on something.
People will rarely thank you for going out of your way on something and usually just getting the job done is enough. It’s not losing sight of pride or quality in your endeavours, it simply means you then give yourself the energy to do more for yourself.
Delegate as much as possible
It’s really easy with illness to still want to do everything by yourself and your way. Inevitably you’re able to do less with illness and will have to ask those around you for help with things. Other people are busy too, and if you’re quietly doing too much (and quietly struggling) it gets harder for those around you to recognise when you need help, because they think you’re managing.
Don’t be afraid of asking people for things, because some people will always forget, or never get around to offering.
You won’t get on with everyone
Some people won’t recognise your illness, some will try to ignore it. Lots of people are too self-absorbed in their own world to consider the needs of others.
Don’t let any of these types of people get you down. Keep things amicable and try to build bridges, if that doesn’t work, build bridges with the people that understand you so that you have connections and friendships for the long road ahead.
Don’t compromise your health for the sake of something else
You and you alone know what your limits of pain and fatigue are. You and your loved ones are the people that will stand to suffer if you overdo things. If you’re ever trying to be encouraged to do more than what’s comfortable for yourself by someone else, because they think you can do it, then ask yourself this:
Can my body do this and how much will I pay for doing this tomorrow?
Don’t stretch yourself too thin. They won’t have to deal with the consequences but you do. If you have any doubt at all politely decline, which brings me to…
Learn to say “no” sometimes
I have absolutely no problem saying “no” to people, but I know a lot of people do. Illness does mean saying no to people occasionally, holding your ground and maybe even being a little rude sometimes. Not everyone fully understands the cause and effect that living with illness has. It’s your job to help them understand why “no” is the right answer for you in certain situations.
“I’m sorry I can’t deliver leaflets later today. I am in quite a bit of pain and I can tell that if I try to walk around the area I’m going to feel even worse tomorrow.”
You can also make alternative suggestions if you still want to help in part:
“But I can email some digital copies to some key local people I know will be interested in coming along.”
Compassion works both ways
Sometimes we’re so bogged down in our own illness it’s hard to remember to enquire about how other people are doing. Don’t forget to spend some time catching up with the people around you, finding out what’s been keeping them busy, and what they are excited about.
If you’re able and happy to, don’t forget to help other people too!
Learn to let people’s complaints slide
Some people really like to moan about very little at all. Let complaints from the fit people in your life fly past you like the wind. Hear it and move on.
Do your best not become bitter about problems you’d rather have. Their life is not yours, this is the only life you have and it’s what you make it. Strive to be a better person than they are being in that moment.
Do your best to remain patient
More easily said than done, but thankfully chronic illness puts us in good stead when it comes to being patient. Being diagnosed will have meant many of us has mourned our old lives and moved on. Those of us who are chronically ill are the bastions of patience, we endure pain, we wait it out and we rough out discomfort every single day.
Attempting to do all that, while working with others can be trying, but it is possible.
Be open about your illness where you feel comfortable
Talk about your illness when you feel comfortable enough with those around you. Doing do will equip the people you live and work with to better understand what you are going through. It will give them more opportunities to help, and will take the pressure off of both of you. (Them having to guess what’s going on in your body and mind, and you trying to shoulder it alone).
Your illness is not something to be ashamed of and is something you can talk about if you feel able to.
Always be courteous
Good manners go a long way. Take the time to give an earnest thank you to anyone that helps you with something. It sounds so obvious but think back to all the times where you’ve forgotten to thank someone properly. People remember that, but they also remember when you take the time to look them in the eye and express your gratitude for being a huge support.