5 Tips for Building a Strong Spoonie Support System


You have a less-than-normal life — you are a chronic illness warrior and it’s tough, but you’ve got it in hand. You’ve learned to be self-reliant and you know there is no shame in needing help, but relationships are hard — finding them, maintaining them, dealing with other people’s problems as well as your own, and it all may feel like more trouble than it’s worth. 

So is it worth the trouble? Well, I’ll put it this way… no one builds their dream life entirely on their own, even if it seems like they do. Look at the most successful people, the most resilient people, and you will find they have a first-class support system around them. Also, I bet if you ask them how easy it was to find those people or even to find that winning combination of people, it didn’t just happen overnight or by accident.

Imagine if you were to run a business the way you run your life. Occasionally you are going to make the wrong choice. Maybe some relationships just doesn’t work and are not the right fit. Does that mean you decide it’s easier not to have the accountant, the personal assistant, the web designer, the marketing specialist? Chances are you are not going to let one mistake derail your plans. In life, having no support, or sometimes even worse, having the wrong support, is going to hold you back from your full potential. So your last employee was the wrong fit — what can you learn from that? Perhaps you realize your advertisement wasn’t explaining your needs clearly or the ads were in publications read by the wrong type of people. Maybe you weren’t providing them with enough value or providing an environment in which they were comfortable. Perhaps you didn’t know enough about them and what was going on in their life.

So what can finding the right support in business teach us about building a first-class spoonie support system in your own life?

1. Are you putting up with a bad match and the resulting bad outcomes because you don’t want to let go of someone?

Are you are focusing all your energy on trying to fix an existing relationship because you don’t want to waste all that time and energy you spent? You don’t want any bad feelings and the idea of starting from scratch is scary and tiring. But hanging on to something that is not working is draining and it holds you back from finding true and uplifting companionship. It is sometimes better to have no one for a while than people who are not helping. It can give you chance to get in touch with what you really need so you don’t make the same mistakes again.

So you’re scared to start again? That’s OK, it’s scary, it’s new. But it can also be refreshing and invigorating and exciting. The thing that is holding you back most is deciding. Once you know either way you can move forward but stuck in limbo not knowing what to do only makes you anxious and confused. So commit to making a decision right now… do you hold on or let go? Decide, and move on.

2. Are you advertising in the wrong places?

Are you are looking for the wrong people, or looking for the right people just in the wrong places? Ask yourself who you really are, what matters to you, what lights you up. Then ask yourself where you are going to find people like that. Where do people like that hang out? And remember this applies both in person and online. Make sure to find the right communities. If you are a stay at home quiet type who doesn’t drink or enjoy big crowds you’re unlikely to find your perfect friends in a nightclub or in a forum for party-all-night types.

3. Have you got your ad right?

Are you giving the impression that you are somebody different or trying to be someone else because you think that is what other people will want? Or maybe you are focusing on the negatives rather than sharing with other people your strengths and skills? You have something unique to offer. You have a gift, that thing that you are just amazing at. You have that thing people want in a friend. But you are so sure your life is such a big ol’ mess that people won’t be able to see beyond that to see what makes you so great. Well, let me tell you something: You do not owe the world an explanation about your illness. What you do owe the world is a piece of what makes you amazing.

So I recommend stopping using your illness as your opening line and start sharing about your passions, your loves, your thoughts and ideas and your dreams. Share your art, your music, your writing, your kindness, your obsessions, your wackiness and weirdness. Friends fall in love with your qualities and your personality, and the other stuff just comes as part of the package and the people who really “get you” and love you will accept that it’s part of the deal. Stop trying to give people an “out” before you’ve even given the friendship a chance.

4. Are you providing an environment where someone can feel good about themselves?

Are you making your support system feel appreciated? Maybe you feel like your circumstances are unfair to the people in your life because it feels like they are able to give more than you can in return? Guess what, that does not make you a freeloader. Life is long and there will be a time for you to pay it forward for someone else in some way. Do not worry about repaying kindness like for like — there are no big or small gestures, and a smile at the right time can be as powerful to one person as a wad of cash is to someone else. Accepting help graciously and saying a heartfelt thank you can be a kindness in itself. It will make that helpful person feel good about themselves, and there is no greater kindness than making someone else feel good.

Yes, friendship is a two-way street, but in a true friendship no one keeps score, and neither should you. If you are guilty of keeping score (and beating yourself up over you always scoring less) then you need to stop and be grateful for what you have. Say thank you, make a small gesture, open up and give more of what you are able to give (your personality) and stop worrying if it is enough. It is enough. You are enough.

5. Do you know what’s going on in their world?

Are you jumping to conclusions about the fact that someone seems angry or distant, that you are the problem, that they are selfish, or that you are too much of a burden? If there are relationships in your life that feel like this, then you need to stop right now, take a deep breath and accept that the world does not revolve only around you. (Sorry, but it’s true.) Yes, there may be genuine problems in your relationships, but human beings react badly to any behavior that could signal being rejected. It is a natural instinctual reaction we can’t control. It’s that feeling of being abandoned by the pack and being isolated, which in times gone by was a genuine danger — there was safety in the pack and without it you might not eat, you might freeze, you might be prey to larger animals. 

So first, it’s OK to feel petrified, but see it for what it is: your body’s defense system which most of the time is blowing things out of proportion. Accept that your worst fears are probably BS and likely nothing to do with you at all. So instead of thinking about yourself, ask if they are OK. Do not, however, make it about you. Starting a conversation with “I’m feeling like you don’t want to spend time with me” is going to come off as selfish and judgmental. Instead, try offering your friendship without any judgement or any caveats, and let them know that whatever is going on for them, you are here for them, and then leave the ball in their court. 

It can sometimes feel like it’s easier to do everything yourself. Less people to disappoint you, less people for you to disappoint, but the truth is that there are good people who will see you for the gift that you are to their own life. You may be living without the complications, but you are also missing out on one of the most important human experiences, the ability to connect with another soul and the joy of seeing what magic that connection can create in the world.

And you, my warrior friend, you deserve magic.

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